2011 Large-scale research infrastructures

Transcription

Kansliets noteringar
Kod
Dnr
2011-5942
2011-36596-89497-29
2011
Large-scale research infrastructures
Area of science
Research infrastructures
Announced grants
Research grant RFI 19 april 2011
Total amount for which applied (kSEK)
2012
2013
2014
2015
2016
27095
38103
42078
42748
42919
APPLICANT
Name(Last name, First name)
Date of birth
Gender
Stenbeck, Magnus
510503-1032
Male
Email address
Academic title
Position
[email protected]
Associate professor
Forskare, Karolinska Institutet, Inst f klinisk neurovete
Phone
Doctoral degree awarded (yyyy-mm-dd)
08-52486141
1991-06-14
WORKING ADDRESS
University/corresponding, Department, Section/Unit, Address, etc.
Karolinska Institutet
Institutionen för klinisk neurovetenskap
Sektionen för försäkringsmedicin
Berzelius väg 3, Solna
17177 Stockholm,
ADMINISTERING ORGANISATION
Administering Organisation
DESCRIPTIVE DATA
Project title, Swedish (max 200 char)
SIMSAM INFRA En övergripande infrastruktur för svenska persondata i forskningen
Project title, English (max 200 char)
SIMSAM INFRA An overarching infrastructure for Swedish person identified data in research
Abstract (max 1500 char)
Infrastrukturen syftar till att skapa samordning och ökad säkerhet i hanteringen av svenska persondata i forskningen. Samordningen
ska bestå av 1. teknisk samverkan kring databaslösningar, dokumentation och analysverktyg 2. skapa tillgänglig övergripande
information om svenska data, samt samordna decentraliserade existerande dokumentationssystem för data 3. analysera etiska
principer, ta fram förslag till samordnade lagregler och tillämpningar,samt bygga upp samordnande funktioner för rättslig hantering av
data med IT-baserade hjäpmedel (rättsinformatik) 4. samverka kring stöd till dataägare/leverantörer, samt bygga system för
forskarstöd genom en samordning av decentraliserade kunskapscentra 5.nordiskt datasamarbete 6. samordna dataresurser inom
de centrala förvaltningsmyndigheterna 7. samordna hälso och sjukvårdens kvalitetsregister för forskning i ett decentraliserat system
8. bygga nationella resurser för hantering av forskargenererade data, gällande såväl aktiva data som arkivering 9. förbättra
integreringen av biobanksdata med övriga data för forskningsändamål. Infrastrukturens övergripande målsättning är således att
skapa samordning utan onödig centralisering. Detta åstadkoms såväl genom organisatoriska lösningar som genom federerade
system och molnteknik för data och dokumentationsdelning. Grundtanken är att data stannar hos dataägarna, men ändå blir
nationella resurser genom de samordningsåtgärder som planeras.
Vetenskapsrådet, Box 1035, SE-101 38 Stockholm, tel. +46 (0)8 546 44 000, [email protected]
Kod
2011-36596-89497-29
Name of Applicant
Stenbeck, Magnus
Date of birth
510503-1032
Abstract language
Svenska
Keywords
research infrastructure, registry research, population data, biobank data, epidemiology
Research areas
*Infrastruktur medicin
Review panel
RFI-5, RFI-4
Classification codes (SCB) in order of priority
30399, 50999, 30299
Aspects
Ethical considerations are described in enclosed appendix A on page: 12
Continuation grant
Application concerns: New grant
Registration Number:
Application is also submitted to
similar to:
identical to:
ANIMAL STUDIES
Animal studies
No animal experiments
OTHER CO-WORKER
University/corresponding, Department, Section/Unit, Addressetc.
Rignell Hydbom, Anna
Lunds universitet
Date of birth
Gender
600412-3540
Female
Academic title
Associate professor
2005-05-13
Ivarsson, Anneli
Umeå universitet
Institutionen för folkhälsa och klinisk medicin
Date of birth
Gender
581110-3901
Female
Academic title
Associate professor
2001-07-01
Persson, Bengt
Linköpings universitet
Nationellt superdatorcentrum
Date of birth
Gender
610828-0055
Male
Academic title
Professor
1991-05-31
Magnusson Sjöberg, Cecilia
Stockholms universitet
Juridiska institutionen
Date of birth
Gender
600419-5225
Female
Academic title
Kod
2011-36596-89497-29
Name of Applicant
Stenbeck, Magnus
Date of birth
510503-1032
Professor
1992-07-02
ENCLOSED APPENDICES
A, B, C, Z, ÖA, S
APPLIED FUNDING: THIS APPLICATION
Funding period (planned start and end date)
2012-01-01 -- 2016-12-31
Staff/ salaries (kSEK)
Main applicant
% of full time in the project
Magnus Stenbeck
2012
100
2013
2014
2015
2016
1052 1052 1052 1052 1052
Other staff
Övrig personal (se bilaga ÖA)
14694 23073 25333 25188 25045
Total, salaries (kSEK):15746
Scientific equipment > 170 kSEK, materials, other costs
24125 26385 26240 26097
2012
Utrustning
Lokaler
Administration
Användarstöd - se bilagorna A + ÖA
Övrigt - t ex möten, licenser, resor mm
2013
2014
2015
2016
8550 9700 11400 12200 12500
530 640 647 653 660
267 374 379 385 390
2002 3264 3267 3270 3272
Total, equipment (kSEK):11349
13978 15693 16508 16822
Total amount for which applied (kSEK)
2012
2013
2014
2015
2016
27095
38103
42078
42748
42919
ALL FUNDING
Other VR-projects (granted and applied) by the applicant and co-workers, if applic. (kSEK)
Funds received by the applicant from other funding sources, incl ALF-grant (kSEK)
POPULAR SCIENCE DESCRIPTION
Popularscience heading and description (max 4500 char)
SIMSAM INFRA En övergripande infrastruktur för svenska persondata i forskningen
Infrastrukturen syftar till att skapa samordning och ökad säkerhet i hanteringen av svenska persondata i forskningen. Samordningen
ska bestå av 1. teknisk samverkan kring databaslösningar, dokumentation och analysverktyg 2. skapa tillgänglig övergripande
information om svenska data, samt samordna decentraliserade existerande dokumentationssystem för data 3. analysera etiska
principer, ta fram förslag till samordnade lagregler och tillämpningar,samt bygga upp samordnande funktioner för rättslig hantering av
data med IT-baserade hjäpmedel (rättsinformatik) 4. samverka kring stöd till dataägare/leverantörer, samt bygga system för
forskarstöd genom en samordning
Kod
2011-36596-89497-29
Name of Applicant
Stenbeck, Magnus
Date of birth
510503-1032
av decentraliserade kunskapscentra 5.nordiskt datasamarbete 6. samordna dataresurser inom de centrala
förvaltningsmyndigheterna 7. samordna hälso och sjukvårdens kvalitetsregister för forskning i ett decentraliserat system 8. bygga
nationella resurser för hantering av forskargenererade data, gällande såväl aktiva data som arkivering 9. förbättra integreringen av
biobanksdata med övriga data för forskningsändamål. Infrastrukturens övergripande målsättning är således att skapa samordning
utan onödig centralisering. Detta åstadkoms såväl genom organisatoriska lösningar som genom federerade system och molnteknik
för data och dokumentationsdelning. Grundtanken är att data stannar hos dataägarna, men ändå blir nationella resurser genom de
samordningsåtgärder som planeras.
Kod
2011-36596-89497-29
Name of applicant
Stenbeck, Magnus
Date of birth
510503-1032
Title of research programme
Appendix
A
Research programme
VRAPS/VR-Direct bilaga 2004.Ae
Attachment A. Research programme for SIMSAM INFRA
Scientific Aim
The overall scientific aim of the infrastructure is to provide an overarching coordinating
platform in order to facilitate research on person identified data of different types and from
different groups of data owners. The ulterior goal is to increase the quality and quantity of
research using national data repositories, and increase the quality of data protection within
medical and social research.
Survey of the field
Since at least 50 years back, the Swedish health and social sciences have had the benefit of
having access to comprehensive population registries. This has made Swedish research very
efficient and productive in terms of the number of publications per researcher compared to
other countries, for instance within epidemiology. Nevertheless, in the face of the new
possibilities that have rapidly developed within eScience, the system for access can be greatly
improved, both in terms of data handling efficiency, collaboration across organizational
borders, and data protection. An especially important area for improvement is combining
population data from Statistics Sweden with health data registries held by the National Board
of Health and Welfare for the purpose of research, since these organizations by law are
obliged to keep the registries on health and social conditions separated, even though the data
can be combined for specified research purposes.
In the past few years, major efforts have been made to coordinate and produce new data
sources. Since a couple of years the Swedish Research Council supports the coordination and
availability of researcher generated data for research in two infrastructures for researcher data
service, The Swedish National Dataservice (SND) in Gothenburg for data within social
science, medicine, and the humanities, and the Environment Climate Data Service (ECDS) for
data regarding climate, environment and geodata. Within the field of geodata, the new
European directive INSPIRE has led to initiatives to coordinate and provide public access to
national geographical information, driven by authorities working such information
(http://geodata.se/sv/Vad/Nationellt/Geodatasamordning/). Especially interesting for the fields
of social science and medicine is that a new dwelling registry has been developed, which
along with person data tied to geographical location will provide the basis for a new Swedish
Census to be released in 2012, the first Swedish census since 1990, when survey collection of
data for the decennial censuses was abandoned.
The Swedish Research Council also supports the development of large scale coordination of
biobanks within the Swedish BBMRI system. BBMRI works on producing quality assured
collection, storage, extraction, and access to biological samples, which to a large extent are
used for research.
A collaborative central and regional government investigation (Guldgruvan i hälso- och
sjukvården, 2010) based on a report from the Boston Consulting Group (Value guided health
care as a platform for industrial development in Sweden, 2009) has proposed a major upgrade
of the support to the national but regionally owned health care quality registries used in
medical practice. One purpose is to increase the use of these data in research. Integration of
the health care quality registries with existing central registries on health and social conditions
and with biobanks holds great promises for future research and for the development of the
health and quality of life of the population.
Parallel to this, there is a growing awareness of the need to protect the rights of the individual,
both in terms of health and wellbeing, and in terms of integrity protection. Hence, there is a
need to develop the legal and ethical systems for research, increase awareness, and develop IT
solutions for the processing of legal decisions dealing with the research use of person
identified data. These measures focus on increasing security, equal treatment, and speed in the
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legal process. The Research Council has proposed that the government review the rules for
personal data access and protection (VR report 2010:11) to adapt to changing conditions in
the research and government structure, but a legal and ethical informatics system adapted to
modern IT solutions for data exchange has not been developed.
The infrastructure
The proposal aims at coordinating personal data in medical and social research in a
decentralized but coordinated infrastructure. Hence, it does not overlap with the main
activities in infrastructures such as SND or ECDS which mainly deal with non-personal data,
but the former organization is involved in parts that are especially relevant or have been
developed within that context. In addition, infrastructure resources provided by the Swedish
National Infrastructure for Computing (SNIC) and the Swedish University Network (SUNET)
are being used. The main applicant institution is the Karolinska Institute. The organizational
structure of the infrastructure is, like the structure of its data, highly decentralized. The
coordination will be accomplished by collaboration between stakeholders, and eventually
automated as far as possible using the tools available in eScience.
Table 1. The Work Package organization of SIMSAM INFRA
WP 1 Coordination
WP
2 WP
3 WP
4 WP
5 Responsible and
MS
Central
Health
Research Biobanks collaborators
authorities care
generated
quality
data
registries
WP
6
JEL, BP
Databases/Computing
WP 7 Metadata/
HJM, CGH
documentation
WP8
Ethical/legal
MGH, CMS,
issues
WP 9 Researcher
EB, UL, HJM,
support
AI
WP 10 International
MS, HJM, CGH
collaboration
Responsible
and MS, CGH SL,
BL, HJM,
ARH,
collaborators
LK, GH, UL, AI
LR
TT, BAG,
JL, NC
JEL: Jan Eric Litton KI, BP: Bengt Persson LiU, HJM: Hans Jörgen Marker GU, CGH: Claus
Göran Hjelm SCB, MGH: Mats G Hansson, UU, CMS: Cecilia Magnusson Sjöberg SU, , EB:
Erik Bihagen SU, UL: Urban Lindgren UmU, AI: Anneli Ivarsson UmU, MS: Magnus
Stenbeck KI, SL Staffan Lindblad KI, BL: Bertil Lindahl UCR, LK: Lars Kjellin KCP, GH:
Gunnar Hägglund RC Syd, TT:Tomas Troëng EyeNet, BAG:Boel Andersson Gäre Futurum,
JL:Jack Lysholm VLL, NC: Nils Conradi ROC Väst
The infrastructure coordinates a few big data owners and/or data owner networks with
individual research projects. These are:
• Central government agency registries
• Regionalized national registries for health care quality
• Researcher generated databases
• Biobanks
2
For these data, coordination is needed in terms of
• Database management
• Computing environments and resources
• Documentation and metada systems
• Ethical issues
• Legal issues
• Data provider support
• Researcher support
• International collaboration
The work is organized in 10 work packages as described in Table 1. Work package 1
describes the governance and management structure. Work packages 2 – 5 describe the data
and packages 6-10 describe the functions. The structure is organized such that data specialsits
and function specialist will work together for tasks pertaining to the cells of Table 1.
WP1 Management and coordination
WP leader: Magnus Stenbeck, KI, Department of Clinical Neuroscience, Section for
Insurance Medicine
• Development work
• Coordination of the operation
The project is managed by a governing board of directors which consists of representatives
from all the co-applicants chaired by a representative of the main applicant university. The
representatives should be the WP leaders, and a representative of the health care competence
center leader group. The board should meet 3-4 times per year. A WP1 office with a small
staff consisting of the WP leader, who acts as an executive coordinator and an academic
secretary, coordinates activities on a daily basis.
An advisory Research Data Board is suggested with representatives from authorities and other
dat owner groups. The permanent members of this board should be VR (The Research
Council) as chair, SoS (Socialstyrelsen), SCB (Statistics Sweden), Sveriges Kommuner och
Landsting (SKL) and the proposed national board for the Health Care Quality Registries.
Other members can be appointed on a rotating schedule or added to the board for specific
tasks when particular competence is required. The main goal of the board is to facilitate
3
researcher access to person identified data held by authorities and research facilities on a
national basis by initiating and supporting work across organizational borders and by
supporting the government in facilitating common infrastructures in terms of legal and
organizational reforms. The board should advise on and monitor the work of the infrastructure
and meet 1-2 times per year.
Each WP should form a WP management committee. The committees of WP2-5 should
normally be composed of the WP leader, important stakeholders/data owners and research
representatives. Experts on technical, metadata and legal aspects should be added from WP 68. WP 6 – 8 should form committees that are composed of the WP leader and representatives
from WP 2-5, with experts from other WPs may added as needed. WP 9 should be governed
by a WP leader representing users, and should have representatives from all other WPs. WP
leaders should be in frequent contact with the WP1 office.
WP 2 Central authorities
WP leader: Magnus Stenbeck, KI. A collaboration with Claus Göran Hjelm, SCB and Petra
Otterblad Olausson, NBHW is planned.
Objective
Building a common system for coordinated research access to central government registry
data distributed across several central authorities, and making this system compatible with
other data sources for research. Operating these services on a daily basis.
Current status
The Swedish statistical system is decentralized. Many registries are partly or fully available at
Statistics Sweden (SCB) which produces official statistics and provides data handling services
for other authorities. In order to support safe access to Microdata, there is currently one
system for online access to registries, MONA (the Microdata ONline Access system) which is
partly funded by the Swedish Research Council (VR). Several off-line services are operated
by other register authorities; the most important is the National Board of Health and Welfare
(NBHW) which holds central health and social services registries. Researchers must mail data
to SCB to be able to combine their own data with MONA data. Health data combined with
SCB data are delivered in traditional ways by transfer of data files to the user.
General needs
The MONA system should be integrated into the overall infrastructure. Financing of the
MONA is included in the RFI budget already, but is included in this application. There is a
need to develop the MONA data warehouse. Longer time series and more registries already
available at SCB should be in the system, and more comprehensive regsitries from toher
authorities than NBHW should be delivered into the MONA system, e.g from The National
insurance Board or the Council for Crime prevention. A modern database handling system is
needed in the National Board of Health and Welfare. An online system for access should be
developed at NBHW. The online systems of the authorities should be made compatible and
combinable, i.e. there is a need to develop a function for merging data via online systems. The
data distribution security must be improved. Application procedures, legal vetting, and data
delivery needs to be quicker and less cumbersome for the researcher.
Databases and computing
A system similar to the MONA system should be planned at NBHW. The goal is to produce
an online database system that can communicate with SCB and the research community via a
national researcher environment. The central authorities should be included in the SUNET
high efficiency data transfer network. A national node for data storage and retrieval at a high
security trusted location should be designed. Remote access to the center should be developed
to ensure secure data handling approved by the authorities. In the long time range, a federated
system is foreseen that is driven by compatible metadata systems. In such a structure, data are
4
retrieved from the data owners using electronic handling of requests. The goal in such a
system is to facilitate all aspects of the process that do not require manual attention.
Documentation
An inventory of metadata systems that are used and available to researchers in Sweden will be
produced. A common documentation standard defining compatibility requirements will be
developed. Authority data is made compatible using common formats.WP7 should produce
bridges between different established documentation systems.
Legal and ethical issues
Coordinate authorities in handling legal issues (e.g. ethical vetting, secrecy trials, archival
procedures) by producing a common legal informatics system using modern IT tools. Suggest
improvements in the legislation increasing the accessibility of data while strengthening
privacy protection. Clarify how data can be shared using modern net based remote access
technology
Researchers support
The main support systems will be located at the different register holders and connected via a
common portal.
WP 3 Health Care Quality Registries
WP leader: Staffan Lindblad, KI, LIME. Collaborations in a committee including
representatives from all competence centers, i.e. Bertil Lindahl UCR, Lars Kjellin KCP,
Gunnar Hägglund RC Syd, Tomas Troëng EyeNet, Boel Andersson Gäre Futurum, Jack
Lysholm VLL, Nils Conradi, ROC Väst.
Objective
Currently, there are over 80 health care quality registries with national coverage in Sweden.
National quality registers are initiated and managed by health care professionals to monitor
and compare quality outcome for patients. By supporting national quality register
organizations when standardizing database structures and integration interfaces, simplify
routines for cross linking data and increasing researchers knowledge about how to access
quality registers, Sweden could make full use of some of the most powerful data sources for
clinical research in the world.
SWOT
By cross linking registers and databases co-morbidity can be studied as well as socioeconomic background variables and their consequences for health outcome. An important and
hitherto unused possibility is to link biological data from biobanks with clinical treatment data
and health outcomes. It is also possible to make long term evaluations of treatments in clinical
practice since information about treatments, background data and outcome is possible to
obtain from mandatory official health registers also from before the intervention studied.
Thus, quality registers, health care registers, personal identification numbers, biobank
infrastructure and a tradition of high quality epidemiological research gives Sweden a
significant comparative advantage in clinical research.
Organization
The national quality registers are kept under the management of health care professionals in
decentralised register organisations. This is important to ensure commitment to the registers
and their relevance for clinical evaluation and for data coverage. By law the county councils
or other authorities are responsible for any operations that involve the use of patient
information on individual level in the quality registers. Thus, initiatives for development of
standards etc. require that all the quality register organisations are full partners in the design
of a joint infrastructure for research. Collaboration between many stakeholders is a challenge
in this decentralized system.
Deliverables
5
During 2012 a representative group of researchers, quality register holders and quality register
centres should be established to produce a detailed plan for a joint infrastructure for quality
register research including how this infrastructure should be coordinated by a national
representative steering committee. At the end of 2012 this plan should be presented to the
stakeholders and they be given the time to give relevant feed back. It is important that there is
a commitment to this plan from researchers, register organisations and quality register centers
. During the second half of 2013 the plan could begin to be implemented. The activities in the
plan should aim to fulfil the purpose of a joint infrastructure outlined in this WP. Likely
activities to be suggested:
o A network for collaboration regarding research support, standardization and legal and
ethical inquiries.
o Increased database programmer competences at the quality register centers with a
national assignment to promote quality register research.
o Development of a meta data portal i.e. information about what kind of registers there
are and their contents
o Development of standard procedures for cross linking data from different quality
registers and health care registers.
o Supporting resources for standardization of national quality register database
structures in joint projects between register organisations and relevant competences
shared on a national level.
WP4 Researcher data
WP leader: Hans Jörgen Marker, GU, Swedish National Dataservice. Collaboration with
urban Lindgren, Anneli Ivarsson, UmU
WP4 focuses on researcher collected person identified data from surveys and examinations.
PID’s may be kept in cohorts used for longitudinal follow-up or new data collection waves,
or in archived data, although normally PIDs are deleted before archiving. In order to keep data
a living source for future merging, some identification must be kept. To find a solution to this
question is paramount. There are quite a few on-going longitudinal projects. WP4 aims at
finding the data sources, establish cooperation and explore ways to harmonize documentation.
The complex and sometimes unclear judicial questions surrounding research and person data
on micro level need to be further explored, and there is demand for legal advice and guidance
to those who consider using this data.
Goal:
This WP will find ways of increasing a new and broader use of researcher-generated data in
line with current ambitions to create common national database infrastructures for research.
Database management/computing
The Swedish research council supports the creation of large databases that are intended to
cover national needs of data within wide areas, such as national social surveys or national
cohort studies within medicine and epidemiology.Wp4 needs to.
1. identify methods to handle, store and make the data holdings easily available for
analysis on a national scale. The work must be done in collaboration with the core
groups of researchers defining and collecting the data.
2. Existing important datasets must be found and made available in national networks via
national nodes. Wp4 aims at suggesting one or several national repositories, like SND,
for keeping data and/or descriptions of methods to get access to or generate researcher
data out of “raw material” (e.g. registry data, survey data).
3. In such systems, create access systems, provide safe and legally sound systems for
storage and access and provide compatible technical frameworks for extracting and
delivering data. Further, provide recommendations for similar database technology
across organizations and provide decentralized and remote access to data holdings
6
rather than using conventional ways of distributing data. The activities will be led by
WP6, but this WP will be contributing substantially to its outcome.
Documentation
1. Existing person identified researcher data of national interest should be listed.
2. Large new data holdings should be documented according to national standards.
3. A program for making old data compatible with new standards should be developed.
Legal and ethical issues
General purpose databases that cover the needs of many researchers are legally questionable
according to the current European and Swedish legislation on data protection. In collaboration
with Wp8,Wp4 should
1. identify and describe the needs of the research community to legislators and present
them in ways which makes it clear which legal changes are needed to accomplish a
researcher generated infrastructure of person identified research data for the social and
medical sciences.
2. propose principles for data ownership and sharing, for instance principles of
moratoriums and sharing of newly researcher collected data.
3. work towards a system where the archival rules are interpreted such that person
identifications on primary researcher data collections can be safely archived.
Researcher support
WP4 needs to
1.help to build compatible data and metadata systems and networks to put data owners and
potential data users in touch with each other for the purpose of learning about and getting
access to national data resources.
2. design methods for legal support to researchers in terms of collecting, using, documenting
and archiving researcher generated data.
3.Develop guidelines for economic remuneration. This will all be done with collaboration of
WP8.
The research generated data included in the project will still be controlled and owned by its
collectors. One or a couple of national infrastructures like SND will be responsible for
collecting metadata and make it accessible as well as taking care of new data that will emerge
from new research. This could be carried out by either saving the datasets actually used or by
saving the scripts that produced the dataset.
WP 5 Biobanks
WP leader: Anna Rignell-Hydbom, LU, Division of Occupational and Environmental
Medicine, Deputy WP leader: Lars Rylander. LU
Objective
Link the Swedish registry infrastructure to the Swedish biobank infrastructure, in order to:
- create procedures for finding samples with certain characteristics (basis for study
designs), and
- facilitate biobank-based research through education on how to linkages of biobanks
and registers can be used for research.
SWOT
In Sweden, there are unique possibilities to further biobank-based research by standardized
and population-based characterization of biobank content by linking biobanks to data from
national and regional registries both within and outside the health care system. However, the
general opinion among researchers is that it is difficult to link information from populationbased registers and biobanks resulting in that the large biobank resources are under-utilized.
The focus of WP 5 is to bring these two resources together to promote combined use of
registries and biobanks in research, which will increase the possibility to conduct international
front research on large sample sets and with long follow-up. Furthermore, population-based
7
biobanks who use a standardised case ascertainment by linkage to disease registries will be
essential for ensuring population representativeness and minimizing risks for selection biases
in epidemiological investigations.
Data management/computing
Swedish biobanks can be combined with information from clinical registries, national health
registries, demographic and social characteristics of the individuals. WP5 will construct a
system for facilitated and standardized linking of biobanks with other data sources. Linking
of data will be done regularly to produce statistics and identify material useful for research.
Currently, this process is manual, non-standardised and subject to logistic errors and security
risks. In collaboration with WP6, WP5 will develop methods to make easy, standardised and
safe linkages to obtain aggregated data on biobank content, without having to release
identifiable data to the biobanks.
Documentation
Data on biobank specimens needs to be documented according to common standards for
documentation of data. WP5 will work with WP7 to establish and adapt biobank
documentation to standards that are compatible with data from the other data sources.
Legal and ethical aspects
The legal framework for biobanks is currently under revision, with a suggestion for a new law
on biobanking, at the moment having its comments from remittance evaluated. In
collaboration with WP8, we will follow up the developments on this area. This will be of
importance for the deliverables in WP5.
Deliverables
For a time specified schedule, see attachment ÖA, In order to link biobanks and biobank
researchers (BBMRI.se and others) to major initiatives and infrastructures for register
research, we will use existing networks, mainly the two national networks SIMSAM and
BBMRI.se, but we will also strive to link to Central registries and Health Care Quality
registries. To further facilitate research we will exploit existing networks for education,
mainly SIMSAM and BBMRI.se. We want to create an infrastructure that can provide an
organized registry linkage service for defining a study base with stored biospecimens and the
exposure and health outcome data. This data is required for researchers in order to be able to
plan the use of these specimens for research. We want to develop a system for linking
biobanks with associated exposure data to Swedish health data registries in a secure and
quality-assured manner.
We intend to write a book in Swedish: ”Forskning där data från personregister och prover från
biobanker nyttjas” (published 2014) and a book in English: “An Introduction to Research in
Registries and Biobanks in Sweden” (published 2015).
We will organize education (at relevant basic high school/university educations as well as at
research level) to improve researcher knowledge about the availability and usefulness of these
data in research, for instance by widening the scope of SINGS, the SIMSAM research school
for registry based research
WP6 Databases and computing
WP leader: Jan-Eric Litton, KI, Department for Medical Epidemiology and Biostatistics.
Deputy WP leader: Bengt Persson, LiU, National Supercomputing Center.
Summary
WP6 will
• Continue the development of applied technical solutions for fast and secure data
transfer between organizations
• Select and develop solutions for encryption of data
8
•
•
Continue the development of applied solutions for authorization
Continue the development of federated database systems for selection of observations
and creation of research databases
• Develop technologies for flexible systems of remote data analysis with sufficient
efficiency and flexibility in terms of the choice of statistical software
• Develop suggested organizational structures for federated data systems
• Provide storage capacity and security solutions for data
• Provide computational solutions and resources for parallel remote statistical analysis
of data
• Set up a test for Cloud computing.
For a list of deliverables 2012-16, see attachment ÖA.
There have been several efforts to pool data in pan- European projects; one of the largest
being the European Prospective Investigation into Cancer and Nutrition (EPIC). Another
example is the pan-European collaboration GenomEUtwin under the 5th Framework
Programme, using the first project driven hub and spoke network with federated databases [1].
While these projects have yielded scientific results, none of them has created a sustainable einfrastructure. Besides these initiatives, harmonisation of biomedical data has been addressed
in collaborations like the Smart Open Services for European Patients epSOS. In Sweden, the
Biobank Information Management System (BIMS) [2] is the most developed solution for
these harmonisation problems, using federated databases. BioGrid in Australia is a federated
system with many users but only support SAS [3]. In the Netherlands, the String-of-Pearls
(PSI) initiative aims to develop a centralised infrastructure for prospective studies among the
8 university medical centres. The current Swedish structure for data sharing consists of a fast
virtual net for the distribution of data (Swedish University Net, SUNET) and a system for
providing technical resources for computing and storage of data (Swedish National
Infrastructure for Computing, SNIC). A corresponding Swedish infrastructure for safe
database handling, retrieval and analysis of data that covers the various data needs that are
described in WP2-WP5 does not exist.
Data warehouse solution
A system for remote access to a centralized warehouse, including analysis capacity, exists in
Statistics Sweden, the so-called Microdata Online Access system (MONA) [4]. This works
primarily for finished data collections of moderate sizes. For most of the data coordination
needs of WP2-WP5, a centralized data warehouse solution is not feasible of legally possible
due to large data size (e.g. biobank data), degree of decentralization (e.g. health care quality
registers), or the rate of change in the content of the user data. Furthermore this solution does
not scale for big data.
Federated data environment
WP6 aims at providing database solutions for coordination for large and complex data sets.
The main goal is to provide a system that can handle person identified sensitive data
efficiently and in a legally acceptable way. We will build on the knowledge of federated
databases, but the database field is moving fast, so we will also explore what services from a
federated system is also suitable for cloud computing. This has never been done, so this stage
is difficult to plan.
A previous demonstration project, Cross-Organizational Data Infrastructure for Research
(CODIR) tested a federated solution for the combination of register data from central
government authorities with decentralized data from clinical laboratories [5]. A demonstration
project using data for the purpose of evaluating the effects of cervix cancer screening was
tested. Data from two central authorities were involved, Statistics Sweden, which provided
basic population data and income and welfare related data, and The National Board of Health
and Welfare, which provided data on health outcomes. The data were combined with pap
9
smear tests from 25 different clinics in Sweden. A federation server trusted by all data owners
contained metadata that are sufficient to specify request from the original data owner servers.
The data was combined using a common encryption key to extract data from the data owners
into the federation server where the data was merged and kept in a user specific area or
domain. The analysis of the combined data was performed either in the research department
or in the trusted location with the help of software uploaded and installed by the users. The
test system was set up as a virtual federated system using local servers. The development of
remote access systems aims at getting access to data from different types of environments
without the need for physical transfers of basic person identified data. Only second phase data
created for specific research projects will be moved to the federated environment, and the
research data is accessible for the researcher via remote connection.
WP6 aims at; 1. Continuing the development of the system by exploring how federated
systems can be implemented at the data owner sites. This entails developing a sufficient
security solution, accommodating several parallel users, and increasing the number of data
owner sites, and 2. Explore the possibilities for Cloud Computing. We will work together,
with the Harvest project which is a collaboration between SICS (Sweden Institute of
Computer Science), PDC (Center for High-Performance Computing at the Royal Institute of
Technology) and Karolinska Institutet.
The federated system will be set up at a SNIC center (Swedish National infrastructure for
Computing, Linköping) for easy integration into the existing e-Infrastructures. However, due
to security reasons and the special requirements from these user communities, we will set up a
dedicated cluster tailored for analysis of person identified sensitive data. Later this might be
possibly to do in the Cloud.
One advantage by including the system into the existing SNIC infrastructure is that the users
will have possibility to access additional clusters providing increased computational capacity
and clusters providing large shared memory (>1 Tb). Furthermore if the Harvest project will
succeed, it will be a part of the SNIC infrastructure. The security issues to be solved when
calculating at other clusters are part of WP6. Furthermore, we see additional advantages when
in the future users want to integrate large-scale sequence data with the large-scale population
data. Thus, the proposed solution to already now set up a system for analysis of person
identified sensitive data within the SNIC-centers will have clear benefits for future analyses.
Database development
Independently of the development of a remote retrieval and analysis system is the
development of recommendations and tools for data handling. A heterogeneous landscape of
data holdings needs to be transformed into mutually compatible formats, and software tools
for the combination of different database formats needs to be developed. The goal for this
work is to provide a minimum set of common data definitions such that users and data owners
can communicate in an efficient way. Common or compatible data formats are independent of
the development of data access methods, and provided by the parallel development of
software tools and support systems for users in transferring data into acceptable formats for
exchange. The following steps will be performed for the mining of different dataset:
1. Ontologization - In the simple case, add a field to the database with the translated value
in an established controlled vocabulary (ontology). In more complex cases, mapping one
or more locally defined terms to an entity in an ontology.
2. Integration of metadata
3. Semantic integration - We will provide ways for data endpoints to produce "semantic
views" where data is accessible in interoperable (ontologized) format, with rigorous
measures for privacy and security
Cloud computing
10
With the advent of the grid and now cloud computing, a myriad of possibilities are now
available for how and where computational and data resources can exist. Cloud computing
opens up new possibilities for simplifying data integration. We envision a test setup for a
local cloud the first year - a setup of a multitude of data for calculations, and data from
platforms to be delivered as cloud images where data is stored in standardized formats. Cloud
computing will scale for big data. Big data is information that grows too large to work with
relational databases and their analytical tools. Setting up a new common safe-storage
infrastructure and computer strategy will have implications for future database handling and
processing in Sweden as a whole.
References
[1] Muilu J, Peltonen L, Litton JE. The federated database--a basis for biobank-based post-genome studies,
integrating phenome and genome data from 600,000 twin pairs in Europe. Eur J Hum Genet. . 2007
Jul;15(7):718-23.
[2] ] Ölund G, Lindqvist P, Litton J-E. BIMS: An information management system for biobanking in the 21st
century. IBM Systems Journal. 2007;46(1):171-82.
[3] M. Hibbert, et al.: The Molecular Medicine Informatics Model (MMIM). In Medinfo 2007: Proceedings of
the 12th World Congress on Health (Medical) Informatics; Building Sustainable Health Systems, 2007, pp.
1230-1234.
[4] C.-G. Hjelm: MONA - Microdata ON-Line access at Statistics Sweden. In Monographs of official statistics Work session on statistical data confidentiality - Geneva, 9-11 November 2005.
[5] Fomkin R, Stenbeck M, Litton JE. Federated Databases as a Basis for Infrastructure Supporting
Epidemiological Research. Proceedings of the 20th International Workshop on Database and Expert Systems
Application. 2009:313-7
WP 7 Metadata and documentation
WP leader: Hans Jörgen Marker, GU, Swedish National Dataservice
A key aspect of coordination and compatibility is the creation of common metadata and
documentation standards. Another key aspect is however to adapt to already created
documentation systems in a heterogeneous environment. An important starting point for WP7
is to create an overview of the way that data is described by the different data owners. This is
made by an inventory and a map of relevant metadata, classification and documentation
standards for the data sources in SIMSAM INFRA.
A first priority for WP7 is to make a comprehensive inventory of the available data holdings
in WP2-5:
1. An information database of all data held by central government authorities
2. An information database on all data kept by regional health care authorities that have
been classified as national resources
3. An information database on the major data holdings in the Nordic countries with the
fields of social science and epidemiology/health sciences.
4. An information database on biological data, including the BBMRI system, but also
smaller local biobanks that are not part of the coordinated structure
Basically it is the responsibility of every data producer to keep data documented thoroughly
and according to accepted standards. At the outset there is little reason to believe that the
same standards are applied by all data producers. The goal of WP7 is to minimize the
requirements of changing documentation systems for old data, but offer rational and useful
standards that are easy to use for new data. Using well-defined standards like Metaplus and
DDI makes it possible to achieve a technical interoperability between different standards. It
will be an important aspect of WP7 to identify metadata standards used by the central
registries, the health quality registries, individual researchers and bio banks. Having identified
the standards the next step will be to explore the ways of making them interoperable.
The main method for making data interoperable is the development of bridges or tools to
translate between documentation standards. Hence, WP 7 should
11
1. Develop technical tools and translation tables for documentation systems within WP 2
–5
2. Define minimum core datasets with common systems for documentation across
appliciations
3. Build easily accessible systems for guiding researchers in using DDI3 or another
selected system as the “best practice tool” for data documentation.
WP8 Ethical and Legal issues
WP leader: Mats G Hansson, UU, Centre for research ethics and bioethics, Deputy WP leader:
Cecilia Magnusson Sjöberg, Centre for legal informatics, SU
Objective
Facilitating the development of a legal framework and best practices governing access to and
use of data for research while protecting personal integrity
SWOT
Access to and use of data for research in social science and medicine is regulated by different
legislations, e.g. The Personal Data Act (1998:204), The Public Access to Information and
Secrecy Act (2009:400), The Archive Act (1990:782), The Ethical Review Act (2009:460),
The Patient Data Act (2008:355). The initiation of a single research project or a research
platform may involve all these and other laws as well as regulations and instructions issued by
the government and public authorities. These rules have different origins, some results from
implementation of EU directives and others constitute central parts of long standing Swedish
legal heritage. Further, there are international conventions that must be taken into account.
The sphere of application of the rules are to some extent overlapping on issues relevant for
research, which amounts to contradictions and incompatible legal obligations on crucial
points from the researchers’ perspective. This situation constitutes a great problem for
researchers and a significant obstacle to a realization of the aims put forward by the Swedish
Government and the research agencies to use registries and data for the benefit of humanity at
large and the public health and medical system in particular.
The primary task of WP 8 is to identify incompatibilities and legal hurdles and to propose
possible ways to find solutions that may be relevant in facilitating the creation and use of data
infrastructures for research. This implies as a first step the detailed evaluation of the rules
both with regard to consequences for research studies and with regard to the interest of
building a coherent legal framework based on the principle of legality in Sweden and the EU,
as well as in international law. The success of such an ambitious enterprise depends on the
understanding of the conditions for law- and rulemaking in an Europeanized and globalized
legal order. The next step implies suggestions de lege ferenda on possible ways to adapt
relevant rules and put forward proposals of best practices within an existing legal framework.
This work will be based on a thorough understanding and evaluation of the ethical and
democratic ideas that have motivated the different rules in the first place, i.e. the values and
basic interests that the legislator or the public authority wanted to protect and promote
through the rules. Of paramount interest in relation to data infrastructures for research are the
concepts of integrity, self-determination, autonomy, freedom of speech, human rights and the
balancing of individual and public interests. Successful solutions of an overview of the
existing rules and proposal of best practices for access to and use of data infrastructures for
research further requires the contribution from ethics and jurisprudence.
Legal informatics
Proper registry research requires legal judgments of various kinds. It is essential to consider
interpretations and applications of rules on ethical vetting, handling of personal data, public
disclosure and secrecy, administrative legislation, archival rules, etc. The fact that modern
12
register based research requires the use of information and communication technology points
at the necessity to consider the interaction between IT and the surrounding legal system.
Beyond materially focused IT-relevant issues concerning matters like the compatibility
between register research and rules on handling personal information, it is also necessary to
consider other aspects of basic legal infrastructures.By legal infrastructure we mean, in this
context, judicially anchored functions for data handling, documentation, communication, and
organization etc. Just to give some examples of this, it is necessary to consider legal security
matters n the development of a national infrastructure for register based research, like for
instance authenticity, data integrity (i.e. data correctness) and accessibility. A particular item
concerns useful methods for storing, de-identifying and deleting register data, with respect to
organizational, technical and judicial factors.It is also prudent to mention that the different
ways to store and transfer data that is being developed must be considered from a legal point
of view. One example of this is “cloud computing” which builds on scalable solutions for
access to hardware, software and e-applications. This form of web-absed solutions raises
questions about the responsibilities for person based information and acceptable security
solutions etc. In summary, modern register research raises a whole lot of legal questions
about the development, implementation and hosting of IT-based systems. In this context, legal
informatics can contribute with theories and experiences of legal system management that
facilitates equal and proper treatment of subjects, efficiency, and a professional approach.
Therefore it is essential that the legal profession has a proactive role by early articulation and
consideration of the legal aspects of the technical designs of a national infrastructure for
register based research.
WP8 will work with
1. Overview and evaluation of Swedish rules – legislations, regulations and instructions
– of relevance for the establishment, access to and use of data and infrastructures for
research.
2. Evaluation of the implications of this work from a European and international
perspective, taking into account the conditions for legislative procedures and
rulemaking in a Europeanized and globalized legal order.
3. Overview and evaluation of the work in Swedish and international ethical committees
that have bearing on data infrastructures.
4. Overview and evaluation of how different rules, legally binding as well as soft law,
have conceptualized and balanced different ethical interest, such as integrity, privacy,
freedom of speech, human rights, individual and public interests at both the Swedish,
European and international level.
5. Proposal of principles for data ownership and sharing policies.
6. Creation of a map of the legal and ethical system for person identifiable data and a list
of changes that would benefit research while protecting salient ethical interests and
attaining a strong protection of integrity.
7. Proposal of a stepwise program for the implementation of this map in practice.
8. Follow and bring added value to parallel work initiated by other agencies including
future government investigations.
9. Cooperate with researchers in WP9 in developing suggestions for an administrative
infrastructure for the coordination of the handling of legal and ethical issues across
data owners under the current legislative system, e.g. common offices for taking care
of applications.
10. Providing support and ethical and legal advice to register researchers and register
organizations.
Ethical and jurisprudential overview and evaluation
13
The ethical and conceptual overview in accordance with task 4 will be carried out as part of
sound scholarly research to be published in peer reviewed international journals as well as in
national reports of the project. The preparatory work of relevant laws, propositions, European
directives and conventions and the work of national and international ethical committees will
be analyzed with the help of established methodologies in ethics and legal research and
philosophy. Based on our previous research we regard the concepts integrity, privacy,
freedom of speech, autonomy, human rights and the balancing of individual and public
interests to be of particular interest in this context. Integrity and autonomy concerns are
arguably of central interest in order to understand how basic values and interests of different
legislative frameworks of relevance to data infrastructures relate to each other.
Legal overview and evaluation
The legal overviews in accordance with tasks 1, 2 and 3 will be carried out as a detailed
follow up and elaboration on the previous work by DISC (Database InfraStructure
Committee) at the Swedish Research Council and the recent report on the Swedish national
quality registries. Further, the effects of Europeanization and globalization on the Swedish
legal order and the Swedish regulatory autonomy will be added to these works, with an
emphasis on what has been described as an ongoing process of constitutionalization of
international law; recognition of human rights and internationally accepted rules governing
the sources of law. Examples of questions in focus for this overview are: accessibility of data;
the use and release of sensitive personal data; conditions for large data withdrawals; the scope
of the research aim; reuse of data; conditions for safe data handling; transfer of data to other
countries; the use of patient data, quality registries and biobanks for treatment of patients, for
quality control and for research and; possibilities to combine data on samples with registries.
WP9 Researcher support
WP leader: Erik Bihagen, SU, Institute for Social Research
Goal
WP9 aims at constructing an infrastructure to serve researchers who want to obtain and
combine person identifiable data in research throughout the research process.
SWOT
The development of the structure proposed will lead upp to a need for a permanent research
support service helping researchers gain oversight and access to the available resources. Since
the knowledge largely is going to remain distributed, the support structure is by necessity
decentralized. In general, the researcher support function will
1. help smaller data owners to become members of the structure by providing help with
documentation, technical requirements, and legal handling of data
2. help users to gain overall knowledge about available resources and provide a portal for
contact with decentralized specialist support functions for different data types in the
system
3. at each data owner site, build data user services to help users get detailed knowledge
about the data, approval to use the data, and delivery of data in a safe and legal way
For deliverables, see attachment ÖA
Organization
In the Spring of 2012 a research support expert committee of senior researchers should be set
up under WP1 with the goal of producing a support system. The committee should include
experts from the big data owners and SND. The resulting support organization should be
decentralized in order to keep users in direct contact with the big data owners. In addition, a
centralized support group for small data holdings should be set up.
Wp10 Nordic collaboration
14
WP leader: Magnus Stenbeck, KI.
The Nordic countries possess unique health registries and databases, giving us the potential to
be world-leading in register-based research in the area of health and welfare. In order to use
these Nordic resources to their full potential, comprehensive approaches are required to issues
regarding legislation, IT, economics, organisation and ethics. If the Nordic countries can work
together on these topics and create functional research infrastructures for eScience in health
and welfare, we will be in a position to lead global advancement in these scientific fields, with
important implications for Nordic research, industry and health care.
Intensified Nordic collaboration would undoubtedly create a center of excellence in the
Nordic hemisphere, and Nordic researchers in welfare and health will be in the forefront in
this area. The Nordic Conference in 2008 identified several fields of action for the future:
• We need to analyze differences in legislation between the Nordic countries and in the way
laws are interpreted in relation to access to data.
• We need to improve documentation of the content and quality of data in available registers.
• We need to develop new technical solutions, such as federated but physically distributed
databases rather than large merged databases kept in permanent storage. The importance of
strengthening data protection must be considered in that context.
• Each statistical authority should have research support written into its basic instructions
from the government. Within these authorities, there should be some research capability in
order to understand research needs.
• To secure the support of politicians and the general public, the importance of transparency,
an open approach to critics and good examples of the usefulness of research was stressed.
A Task Force group on Open Access consisting of representatives from each Nordic country
was formed within the framework of the NordForsk funded NORIA-net “The eScience
Initiative” also known as eNORIA. The Task Force group has discussed ways to make the
above general recommendations for collaboration more concrete in the field of health
research. In 2011, a report based on the group’s work and the Nordic conference on Registry
epidemiology in Iceland 15-16 June 2011, will be the basis for developing a number of
concrete suggestions on how to improve the conditions for collaboration.
In addition, a collaboration with the Norwegian project “Health Registries for Research” (PI:
Stein Emil Vollset, UiB, Public Health and Primary health Care) has been established. In the
event of a successful application, a regular collaboration will be set up between the sibling
projects.
Additional Co-applicants
Efternamn Förnamn Pnr
Kön Titel
Drexamen Org
Inst
Bihagen
Erik
man Docent
2000
Sthlms
SOFI
universitet
Marker
Hans500604- man Förenej
Gbgs
SND
Jörgen
4670
ståndare
universitet
Litton
Jan-Eric
195012 man Professor
1983
Kar. Inst. MEB
Rylander
Lars
1964
man Docent
19970307 Lunds U
Medfak
Hansson
Mats G
1952
man pPofessor
1991
Uppsala
Ctr f Res
U
Ethics &
Bioethics
Lindblad
Staffan
man Univ.lektor 1987
Kar Inst
LIME
Lindgren
Urban
660219- man Professor
1997
Umeå U
Inst
8514
soc/ek
geografi
15
Kod
2011-36596-89497-29
Name of applicant
Stenbeck, Magnus
Date of birth
510503-1032
Appendix
B
Curriculum vitae
VRAPS/VR-Direct bilaga 2004.Be
CV Magnus Stenbeck; born 1951
1.
2.
3.
4.
5.
6.
Högskoleexamen: Socionom, förvaltningslinje, Örebro universitet 1976;
Doktorsexamen:, PhD Sociology University of California Santa Barbara 1990. “Rasch
measurement of labor market change”, Main supervisor: William T Bielby;
none
Docent: Sociology, Stockholm university 1998.
Since 2007 Senior Researcher Karolinska Institute (KI), Dept of medical epidemiology and
biostatistics 2077 – 2010. Since 2011-01-01, since 2011-01-01 Dept of clinical Neuroscience,
Section for Insurance Medicine. From 2007-01-16 – 2011-03-31 Head/Scientific Secretary of
DISC (Database Infrastructure Committee, Vetenskapsrådet), research part 20%. Since 201104-01 research part 100%.
Other employments:
200702 – 200912
Senior Researcher 20%. University of Karlstad. Department
of Social and Life Sciences. Parttime. Tobacco behavior
research. Counseling of doctoral students.
200701 – 201001
Administrator/researcher. Unit for Analysis 50%; Center
for Epidemiology, National Board of Health and Welfare.
Parttime. International infrastructure for health monitoring,
Senior Consultant Research Methodology.
199803 - 200701
Director. Head of Unit for Analysis. Center for
Epidemiology (EpC), National Board of Health and
Welfare. Responsible for national public health and social
reports, and register based social and epidemiological
research
199208 – 199802
Department Director. Researcher at the R&D section EpC.
Appointed “specialsakkunnig” in research methodology.
199107 – 199207
Assistant Professor. Department of Sociology, University
of North Carolina, Chapel Hill, USA
199009 – 199106
Evaluator. Health Program Unit, Social Medicine Kronan,
KI and the County Council of Stockholm.
199006 – 199009
Researcher. Statistics Sweden.
198808 – 199009
Researcher. Department 55 Behavioral Sciences, National
Defense Research Institute of Sweden.
198709 – 198807
Research/Teaching Assistant. Social Science Computing
Facility, University of California, Santa Barbara, USA
198406 – 198708
Research Assistant. National Science Foundation grant
SES84-11359. PI: Professor Otis Dudley Duncan.
198401 – 198406
Teaching Assistant. Department of Sociology, University of
California, Santa Barbara, USA
197607 – 198312
Researcher. Department 55 Behavioral Sciences, National
Defense Research Institute of Sweden. (leaves of absense
during corresponding periods of employment at the
University of Karlstad, see below)
198212 - 198306
198107 – 198112
198008 – 198103
198001 - 198006
197903 - 197905
Lectureship, University of Karlstad
197604 – 197606
Research Assistant, Department 55 Behavioral Sciences,
National Defense Research Institute of Sweden.
(25%)
(50%)
(100%)
(50%)
(100%)
197506 – 197604
Military service as Research Assistant, Department 55
Behavioral Sciences, National Defense Research Institute
of Sweden.
7. The bulk of my employed time since 1992 has been primarily research administrative
positions in government (Socialstyrelsen), mainly as head of the research unit, with some
(20 – 40%) research included.
8. Assistant supervisor Linda Beckman. (Main supervisor: Curt Hagquist). University of
Karlstad, Department of Life and Social Sciences. Mental health and stress among schoolage children. Ongoing.
Assistant supervisor Rickard Lindkvist, 2005-05-13 “Hospital Length of Stay:
Register-based Studies on Breast Cancer Surgery” (Main supervisor: Finn
Diderichsen). Karolinska Institute, Department of Public Health
During my career I have had long and extensive experience of building infrastructure similar
to the structure planned here, including many years of being the Swedish representative for
the Ministry of Health in building a European health monitoring system within Dg 5 Health
and Comsumer Affairs, and being head of research and acting deputy head of the Centre for
Epidemiology in the National Board of Health and Welfare. In addition, since 2007 I have
spent my time as the head of DISC building an academic network which will help in the
SIMSAM INFRA development work.
BILAGA - CV
Name: Anna Rignell-Hydbom
Born: April 12, 1960 (pnr 600412-3540)
1.
1984 University certificate in nursing, Lund
1995 University Diploma of Midwifery, Lund
2000 Diploma of Education for the Upper Secondary school at Malmö University,
Sweden.
2001 Bachelor of Science in nursing, Lund University
2. PhD 2005-05-13
Thesis title: Exposure to persistent organochlorine pollutants and male semen function.
Supervisors: Professor Lars Hagmar, Associate Professor Lars Rylander, Professor
Aleksander Giwercman
3. Post-doc employment: 2005-2007 Division of Occupational and Environmental
Medicine, Lund University.
4. Associate Professor: 2009-04-16 Environmental Medicine.
5. Current position: Researcher at the Division of Occupational and Environmental
Medicine, Lund University. Time for research: 100%. 20056. Previous positions:
1984-1995 Nurse at the Maternity Ward, Lund University Hospital.
1995-2001 Midwife at the Maternity Ward, Lund University Hospital
2001-2005 PhD student at the Division of Occupational and Environmental
Medicine and Psychiatric Epidemiology, Lund University
2007-2008 Researcher at the Department of Molecular
Reproductive Medicine, Lund University, Malmö.
7. Maternal/military leave during research time: None
8. Supervision of PhD students:
Supervisor Amanda Ode 2011Co-supervisor for
Kerstin Nilsson 2009Ebba Malmqvist 200910. Other information
Awards
The Ulf G Ahlborgs prize in Environmental Research 2006
Significant national and international commissions
Continuous collaborations with PhD-researchers.
Coordinator for SIMSAM EarlyLife, a research project within the Swedish Initiative for
research on Microdata in the Social and Medical Sciences, SIMSAM, supported by the
Swedish Research Council; 2008— [http://www.med.lu.se/simsam_early_life]
Leader of the work package Exposure to cadmium and fractures; interaction with
persistent organic pollutants”. within the EU integrated project PHIME
(www.PHIME.org); 2006—
Leader of the workpackage “Diabetes and kidney disease” within FAS-centre of
excellence and research school Centre for Medicine and Technology for Work Life and
Society at Lund University [http://www.metalund.lu.se/].
WP leader in a project financed by the EU (INUENDO – Human risk for biopersistent
organochlorine in the environment [http://www.inuendo.dk/], and participate in the ongoing project CLEAR (http://www.inuendo.dk/clear/).
Educational experience
Continuously involved at the Programme for medical training at Lund University, Risk
assessment courses as a course leader/lecturer/seminar tutor since 2004.
Commission of trust
Deputy Head of Institution of Laboratory Medicine, Lund University 2008Head of the Division of Occupational and Environmental Medicine 2010-
Bilaga B; Anneli Ivarsson; 581110-3901
ANNELI IVARSSON [19581110-3901]
Associate professor & Specialist in pediatrics
1. University degree
Medical degree, Umeå University (UmU) (1985).
2. PhD-degree
PhD degree in Medical Sciences, Pediatrics (2001).
Title: “On the Multifactorial Etiology of Celiac Disease. An Epidemiological Approach to the
Swedish Epidemic”.
Supervisors: Lars Åke Persson and Olle Hernell.
3. Post-doc visits
4. Associate Professor
Associate Professor in Epidemiology and Public Health Sciences, UmU (2008).
5. Specialist examinations
Registered Physician (1987) and Specialist in Pediatrics (1991).
5. Current positions
A post combining the following and admitting about 60% of a full-time postion for research.
- Senior lecturer in epidemiology with focus on children and adolescents, Epidemiology and
Global Health, Dept of Public Health and Clinical Medicine, UmU, 2004 and onwards.
- Senior Consultant with focus on Child Public Health and Epidemiological Surveillance,
Västerbotten County Council, Sweden, 2004 and onwards.
6. Previous positions
County Council: House officer (9½ m) (1982-1984); Pre-registration house officer, Lycksele
hospital (1985-86); Specialist training in Pediatrics, University Hospital of Northern Sweden
(NUS) (1987-90); Senior Consultant in Child Health Care Services, Västerbotten County
Council (1991-93); Ward Physician, Pediatrics, NUS (1994-2000); Senior Registrar,
Pediatrics, NUS (2001-2002); Senior Consultant, Pediatrics, NUS (2003).
The University: Doctoral student position, UmU (4 years, 1994-99); Senior lecturer in
pediatrics (16 m), UmU (2001 and 2003).
7. Research intermissions
Present and previous positions with obligations also outside of research. Parental leave for
children born 1988 and 1993 (about 1½ years).
8. PhD student supervision
Kathy Kahn, M.D; UmU, PhD-exam in 2006 (main supervisor).
Cecilia Olsson, BSc; UmU, PhD-exam 2008 (co-supervisor).
Presently, supervision of 10 PhD students,
and being main supervisor for 5 out of these.
1 (9)
9. Specialist examinations
Registered Physician (1987) and Specialist in Pediatrics (1991).
10. External funding
Main applicant:
1) Project “Celiac disease. Has time come for primary prevention and mass screening?”.
FAS 2 400 000 SEK (2006-2008), VR 2 625 000 SEK (2005-2010), and FORMAS 4 258 750
SEK (2005-2010);
2) Program ”Microdata research on childhood for lifelong health and welfare”. VR-SIMSAM
28 800 000 SEK (2008-2013).
Co-applicant:
1). Program “Public health meeting globalisation”. FAS centre of excellence.
55 000 000 SEK (2007-2016);
2) Project “PreventCD”. EU 39 000 000 SEK (2007-2010);
3) Project “Towards sustained organisational learning and innovation in health service”
Vinnvård 4 000 000 SEK (2008-2010);
4) Program “Parental support in cooperation in the Umeå region. Swedish National Institute
of Public Health 8 000 000 SEK (2010-2011) and 8 000 000 (2011-213), with ½ for research.
11. A selection of assignments
Responsible for the National Register for Coeliac Disease in Children (1998-);
Responsible for the multi center study ETICS: Exploring the Iceberg of Celiacs in Sweden
(2004-);
Paediatric expert and scientific leader of the Child-Health Intervention Programme in
Västerbotten (Salut) (2005-);
Work package leader for the Swedish part of the EU-supported project PreventCD (2005-);
Scientific advisor to the Swedish Society for Celiacs (2007-);
Deputy leader of Umeå Centre for Global Health Research (FAS-center of Excellence)
(2007-);
Chair of the Working Group on Celiac Disease, Section of Gastroenterology and Nutrition,
the Swedish Paediatric Association (2007-);
One out of two teachers in the course “Research methodology and Biostatistics”, taken by all
PhD students in the medical faculty of UmU (2007-2008, 2010-);
Faculty opponent for a doctoral degree at Linköping University (2007-),
Editorial Board member of Global Health Action, an open access scientific journal (2008-);
Board member at PhD-exams at UmU, Uppsala University and Nordic School of Public
Health in Gothenburg during 2009-2010;
Leader of the Swedish Research Council supported SIMSAM network at Umeå university
focusing on register-based research connecting childhood with lifelong health and welfare,
<www.simsam.org.umu.se> (2009-), and leading the national coordination of the SIMSAM
initiative (2011-);
Scientific advisor of the Swedish National Institute of Public Health (2009 - );
Member of the steering group for Epidemiology and Global Health at UmU (2010-);
2 (9)
Honorary senior researcher at University of Witwatersrand, Johannesburg, South Africa
(2010-);
Nominated by the medical faculty at Umeå University to compete for the Söderberg
professorship at the Royal Swedish Academy of Sciences (2010).
3 (9)
Annex B
Bengt Persson, 610828-0055
Curriculum vitae, Bengt Persson, born 28.08.1961
1
Annex B
A. Academic education





Med. kand. 1983-01-18, Karolinska Institutet.
M.D. 1986-06-18, Karolinska Institutet.
Ph.D. 1991-05-31, Karolinska Institutet. (Subject: medical chemistry. ”Protein
organization. Signals, domains and other functional units determined by structural
analyses, comparisons and predictions”. Supervisor: prof. Hans Jörnvall)
Postdoc at EMBL, Heidelberg, 1992-09-01–1994-12-31, in “Biological structures and
biocomputing programme”, the group of prof. Patrick Argos, where I worked on
development of prediction methods for membrane proteins.
Docent in Medical chemistry, 1993-05-27, Karolinska Institutet.
B. Appointments
CURRENT
Professor (chair) of bioinformatics, Linköping University, 2002– current.
Director of NSC (National Supercomputer Centre), Linköping, 2008–current.
PREVIOUS
Senior lecturer, Stockholm Bioinformatics Centre, 1999–2002.
Assistant professor at the Medical Research Council, 1995–1998.
Postdoc, EMBL, 1992–1994
Ph.D. position at the Medical Research Council, 1989–1991.
Utbildningsbidrag+amanuens, KI, 1986–1988
20% Amanuenstjänst, KI, 1982–1986
ASSIGNMENTS
KI: 1 of 25 selected to the leadership education programme “Framtidens ledare” 1997.
C. Tutoring experience


7 PH.D.:S FROM MY RESEARCH GROUP
Erik Nordling 2002, Yvonne Kallberg 2002, Johan Nilsson 2004, Anders Bresell 2008,
Mikko Hellgren 2009, Jonas Carlsson 2009, Joel Hedlund 2010.
1 PH.D. STUDENT PRESENTLY IN MY RESEARCH GROUP
Fredrik Lysholm, registered 2008
D. Publications and h-index



158 publications (incl. 1 submitted and 3 manuscripts)
6109 citations (average of 40 citations per paper)
h-index 37
E. Other merits of relevance
THESIS EXAMINATION (Opponent)
 Opponent for Ph.D. theses 3 times (Maria Edman, Umeå University, 2001; Wagied
Davids, Uppsala University, 2005; Liqun He, Karolinska Institutet, 2007)
 “Opponent” for lic. theses 3 times.
 Member of Ph.D. theses examination bodies over 30 times.
EVALUATOR
 for lectureships, docentships and assistant professorships 1998, 2001, 2003, 2006, 2007.
 for the Wallenberg Foundation and VINNOVA 2003, 2006; for the Swedish Research
Council 2005, 2006, 2009; for the Norwegian Research Council 2006, 2007, 2008, 2009.
Annex B
2
SCIENTIFIC JOURNALS
 Eur. J. Biochem./FEBS Journal: Editorial advisory board 1994–2009.
 Referee for Applied Bioinformatics, Biochemistry, Biochim. Biophys. Acta,
Bioinformatics, BMC Briefings in Bioinformatics, BMC Mol. Biol, Eur. J. Biochem.,
FEBS Journal, FEBS Lett., Genomics, Pharmacogenomics, Protein Engineering, Design,
and Selection, Protein Science, Proteins – Structure, Function, and Bioinformatics, Nature
Oncogene.
TEXT BOOK
Editor of text book in medical chemistry: Ingelman-Sundberg, M. & Persson, B. (ed.) (1989)
”Människokroppens kemi”, Natur & Kultur, 472 pp.
SCIENTIFIC CONFERENCES
 Organisation of 13 conferences, e.g. “Bioinformatics XX”, 7 years, 1999–2005
(organiser 2004 and 2005, programme committee 1999–2003), “11th International
Congress on Genes, Gene Families and Isozymes”, Stockholm, 2001, Wenner-Gren
Symposium in Bioinformatics, Stockholm, 2003
 Active participation with presentations at over 30 international conferences.
ADMINISTRATIVE ISSUES (selection)
 Chair of IFM Bioinformatics, Linköping University, 2002–current.
 Director of NSC (National Supercomputer Centre), Linköping, 2008–current.
 ELIXIR steering board, 2007–current. (ELIXIR is an EU project to establish the future
pan-European infrastructure for biological information)
 SERC steering group, 2009–current. (SERC=Swedish E-science Research Centre)
 Programme director of the Research school in medical bioinformatics, 2001–current.
 Board of NDGF (Nordic Data Grid Facility), 2006–2010.
 Swedish Research Council, Beredningsgruppen för E-science, KFI, 2005–2007.
 Board of SNIC (Swedish National Infrastructure for Computers), VR, 2006–2007.
 Board of DISC (Database Infrastructure Committee), VR, 2008–2009.
 Board of SNUG (SNIC User Group), 2005–2007.
 Board of National Supercomputer Centre (NSC), deputy member, 2004–2006
 Board of IFM, Linköping University, 2003–2008.
ADMINISTRATIVE EDUCATION
Participation in the leadership education program “Framtidens ledare” 1997–1998 at
Karolinska Institutet, comprising totally 60 days.
PEDAGOGIC EDUCATION
Pedagogic workshop, 1990; Workshop (54 h) in presentation techniques, 1991; Mass media
contacts and presentation techniques, 1992; University pedagogics, 1992
PRESENT TEACHING
 Organiser and examiner, Bioinformatics courses at Linköping University and at Karolinska
Institutet for 4th year students and post-graduate students.
POPULAR SCIENCE
– Organisation committee for the yearly “Berzeliusdagarna”, 1996–
– Organisation committee for the research school “I molekylernas värld”, Karlskoga, 1997–
– Editorial board of “Medicinsk Vetenskap”, 1994–1997.
Curriculum Vitae
of
Cecilia Magnusson Sjöberg
Professor and Director of
The Swedish Law and Informatics Research Institute (IRI)
Faculty of Law
Stockholm University
106 91 Stockholm
Tel + 46 8 16 28 93 or + 46 70 511 43 68
E-mail [email protected]
Web www.juridicum.su.se/iri/
1. Högskoleexamen
1984, Jur. Kand.
2. Doktorsexamen
1992, Juris dr., Rättsautomation: Särskilt om statsförvaltningens datorisering (Norstedts juridik), Peter Seipel
handledare.
3. Docentkompetent
1993
4. Nuvarande anställning
Professor, legal informatics, Stockholm university
5. Tidigare anställningar
Lecturer as from 1993 until appointment as professor 2001.
Academic positions, research assignments and training
Current:
Professor, LL.D. Faculty of Law, Stockholm University
o Director of the Swedish Law & Informatics Research Institute (IRI),
Stockholm University (www.juridicum.su.se/iri) (since 2006)
o Course Director of Law and Information Technology (“Rättsinformatik”),
Stockholm University Law Programme,
www.juridicum.su.se/jurweb/utbildning/grundkurser/rinformatik/ (since 2006)
o Course Director of Master Programme in Law and Information Technology,
Stockholm University (since 1999)
o Lecturer at the Department of Computer Science, King’s College London,
Strand Campus: Designing and coordinating the module “IT Law for IT
Professionals” (lecturing, preparing and first-marking of the examination
scripts), MSc/PG Diploma in Computing, IT Law and Management (since
2009)
2010
Visiting scholar at Faculty of Law, Bond University, Gold Coast, Australia
2004
Four year appointment as a Visiting Examiner to the MSc/PG Diploma Information
Technology and Internet Law Board of Examiners within the King’s College
Postgraduate School of Physical Sciences & Engineering (commencing 2004/2005),
London
2002
Responsible for the SLIM Project (Secure Legal Information Management), financed
by the Royal Swedish Academy of Sciences and Bank of Sweden Tercentenary
Foundation (www.juridicum.su.se/slim)
2001
Appointed Professor of Law and Information Technology
2000-2002
1996-2000
1994-1999
1993
1993
1992
1986-1987
1985-1992
1984
1981-1983
1981-1984
Responsible for the so called LEXML project - a research project concerning legal
and technical aspects of safe document handling, financed by the Swedish National
Board for Industrial and Technical Development
Swedish partner in the DAPRO project (Data Protection in Europe) as part of the
Telematics Applications Programme, financed by the Directorate General XIII
–Responsible for the Corpus Legis Project, co-financed by the Swedish Research
Council for the Humanities and Social Sciences (HSFR) and the Swedish Council for
Planning and Coordination of Research (FRN) (www.juridicum.su.se/iri/corpus)
Employed as lecturer in Law and Information Technology, Stockholm University
Appointed as unsalaried Associate Professor of Law and Information Technology,
Awarded LL.D. Degree
Employed at the Swedish Agency for Public Management, participating in the
development of decision-making support system
Doctoral position at the Swedish Research Council for the Humanities and Social
Sciences. Research grant from the Swedish Employers’ Confederation. Scholarships
granted by the Institute of Advanced Legal Studies, Torsten and Ragnar Söderberg’s
Foundation, and State and the Law Foundation
Awarded Bachelor of Laws Degree, Stockholm University
Research assistant working with David Flaherty, Professor of History and Law,
University of Ontario, Canada, on ‘The International Comparative Research Project
on Data Protection in Practice’
Employed at the Department of Law and Information Technology, Stockholm
University, part-time and fulltime; administrative tasks, independent inquiries and
teaching
Prizes and awards
2006
Honorary Member of the Swedish Association for Law and IT (“Svenska föreningen
för IT & juridik, ADBJ)
2002
Royal Swedish Academy of Sciences Research Fellow (the aim of this five years´
appointment has been to promote excellence in the field of legal science by creating a
research position for an especially talented researcher)
1994
Awarded the Swedish Government Research Advisory Board’s prize for talented
researchers for ‘pioneering work in the field of legal governance and information
technology’
1993
Granted a scholarship by the Stockholm Society for Higher Education for
outstanding doctoral thesis
Examples of current assignments
– Chairman of the Swedish Trust for Legal Information (www.rattsinfo.se/)
– Chairman of the Board of the Swedish Law and Informatics Research Institute, Stockholm
University (www.juridicum.su.se/iri/)
– Member of the Law Faculty Board
– Member of the Board of the Foundation of 28 October 1982 (for the promotion of, inter alia,
international and interdisciplinary contacts among young researchers)
– Member of the Board of the Faculty Courses Foundation, Stockholm University
– Member of the Board of the Scientific Council of the Stockholm Centre for Commercial Law.
– Supervisor of three doctoral students
[Sökande personnummer]
Bilaga B - CV
Bilaga B – CV
ERIK BIHAGEN’S CURRICULUM VITÆ
1. Högskoleexamen (disciplin/ämnesområde).
1991
M.A. (fil mag) in social science, Umeå University, 1994.
2. Doktorsexamen (år, disciplin/ämnesområde).
2000
Doctor of Philosophy (filosofie doktor) in sociology, Umeå University, 2000.
3. Relevanta postdoktorsvistelser (år och placering).
2004-2006 Post-doc (VR 412-2002-733), Swedish Institute for Social Research (SOFI),
2002-2004 Post-doc (financed by VR 412-2002-733), Department of Social Science,
Mälardalen University (Högskola)
4. Docentkompetens (år).
2007
Associate Professor (docent) of sociology, Stockholm University.
5. Nuvarande anställning, förordnandetid, andel forskning i anställningen.
Associate professor (forskare) (100%) at the Swedish Institute for Social Research,
Stockholm University. Proportion research: 80 percent (ca 20% administration)
6. Tidigare anställningar och förordnandetider (ange typ av anställning).
2000-2004
Lecturer at the Department of Social Science, Mälardalen University/Högskola.
1998-2000
Doctoral candidate position (doktorandtjänst) at the Department of Sociology,
Umeå University.
1995-1998
Research assistant (forskningsassistent) at the Department of Sociology, Umeå
University.
7. Föräldraledigheter, tjänstgöring inom totalförsvaret eller liknande samt
avräkningsbar forskartid för detta.
2001
parental leave part time (3 months in total).
8. Personer som avlagt doktorsexamen under din handledning (namn, disputationsår).
Johanna Kumlin, 2007 (huvudhandledare Jan Jonsson)
Annat av betydelse för ansökan
I am the coordinator of the SIMSAM-node at the Swedish institute for Social research (SOFI)
(VR 2008-7499) at Stockholm University and I am active in this national
network in both the reference group for the research school (SINGS) and the
network at large. I am also member of the Nordforsk Researcher Network
(#29040): Register-Based Life Course Studies: Sociological, Economic and
1
The Gender Gap in Workplace Authority: a Family Affair?
Demographic Perspectives with the aim of promoting exchange among Nordic
register researchers within this field of research.
2
Hans Jørgen Marker, 500604-4670, B
Appendix B – Curriculum Vitae, Hans Jørgen Marker, 500604-4670
1974:
Minor i mathematics, Århus Universitet, Denmark
1982:
Major in History, Århus Universitet, Denmark
3. Relevant post-doctoral experience
1987:
Research fellow at Max Planck Institut für Geschichte, Göttingen, Germany
4. Assistant professorship “Adjunkt”, Associate professorship ”Lektor”
1983:
Adjunkt at Danish Data Archives, Odense University, Denmark (appointment in 1983,
employment 1984)
1987:
Lektor at Danish Data Archives, Odense University, Denmark (appointment in 1987,
employment in 1988)
5. Present employment, time of appointment, time for research in the
employment
2009-:
Director (föreståndare) at Swedish National Data Service, University of Gothenburg, Sweden
6. Previous employments and time of appointments
2003-09:
Senior researcher at Danish Data Archive, Danish State Archives 1
1997-03:
Archive director at Danish Data Archive, Danish State Archives
1995-97:
Manager of Statens Arkivers Edb-driftscenter and chairman of Statens Arkivers Edb-råd,
Danish State Archives
1993-97:
Senior researcher at Danish Data Archive, Danish State Archives
1988-93:
Associate professor (lektor) at Danish Data Archives, Odense University
1987:
Research fellow Max Planck Institut für Geschichte in Göttingen
1984-88:
Assistant professor (adjunkt) at Danish Data Archives, Odense University
Commissions of trust
2010-:
1
Member of Database Infra Structure Committee
Danish State Archives is the somewhat unfortunate official English name of the national archives of Denmark
2010-:
Affiliated to the coordination committee the Swedish Initiative for research on Microdata in
the Social And Medical sciences, SIMSAM
2010-:
Affiliated to the management board of Environment Climate Data Sweden, ECDS
2010-:
President of Council of European Social Science Data Archives
2009-:
Member of the Board of International Federation of Data Organisations
2006-09:
Chairman for Expert Committee for Data Documentation Initiative
2005-:
Cooperating editor for Historical Social Research
2003-:
Member of Steering Committee for Data Documentation Initiative Alliance
2002-06:
Vice chairman for Expert Committee for Data Documentation Initiative.
2002:
First opponent on Frode Ulvunds thesis ”Byens Udskud?” at the University in Bergen
2001-04:
President for Association of History and Computing (Global)
2000-:
Member of Kildeindtastningskomiteen, KIK. (Steering committee for the Danish Demographic
Database)
1999-10:
Secretary for Council of European Social Science Data Archives
1998-01:
President of the Nordic Branch of Association for History and Computing
1994-00:
Censor at Institute for Humanistic Informatics, University of Copenhagen
1989-94:
Member of Text Encoding Initiative: Text documentation Committee.
1987-92:
Member of council for Association of History and Computing
Curriculum vitae Jan-Eric Litton
November 2010
Name: Jan-Eric Litton, Male.
Home address: Erik Dahlbergsgatan 71 2 tr, 115 57 Stockholm, Sweden.
Nationality: Swedish
Year and country of birth: 1950, Sweden.
Residency: Stockholm, Sweden.
Swedish Social Security Number: 501229-0093
E-mail: [email protected]
http://ki.se/meb
2. Doctoral degree
1983
Dr. Medical Science, Karolinska Institutet, Positron emission tomography of the
brain; technology and application, supervisor: Lennart Widén
3. Postdoctoral work
1986-1987 Post Doc, The Research Medicine Department of Lawrence Berkeley Laboratory
and Donner Laboratory of the University of California, USA
4. Qualification as Associate Professor
1990
Docent (asst.prof) in Biomedical Technology, Karolinska Institutet.
5. Current positions
2002 Professor of Biomedical Computing Technology at the Department of Medical
Epidemiology, Karolinska Institutet
2010-
Co-director, BBMRI.SE
2006 -
Co-director, LifeGene project
2003 -
Director of Informatics, Karolinska Institutet Biobank
2000 - 2010 Head, IT and computing, Department of Medical Epidemiology, Karolinska Institutet
2007 Swedish Research Council representative in Biobanking for Europe
2006 Member of the P3G board
2006Co-director of the LifeGene initiative, www.lifegene.se
2009 - 2010 BISC (Biobank Infrastructure Committee), VR (The Swedish Research Council)
2003 - 2010 Director of Informatics, Karolinska Institutets biobank
2005 - 2009 Workgroup leader in the FP6 framework; Coordination Action; Harmonizing
population-based biobanks and cohort studies to strengthen the foundation of
European biomedical science in the post-genome era
2003 - 2008 International workgroup leader in P3G (IWG2)
2003 - 2007 Member of the EU Network of Excellence in Semantic Mining
2003 - 2007 Steering group GenomEUTwin
2002 - 2004 Steering group Medical Informatics, Karolinska Institutet
1999 - 2001 Steering group Human Brain Informatics (HUBIN).
1993 - 1999 International Advisory Board, Hungarian PET Center
1977 - 1991 Member of the Advisory Board, Karolinska Center for PET studies.
1983 - 1990 Chairman, Karolinska Institutet´s Union for Engineering.
1982 - 1986 1988-1990 Member of the SACO/SR Council, Karolinska Institutet.
1982 - 1984 Member of the Board for Swedish Biomedical Engineering.
1985
1977
Created the first “Internet” connection at the Karolinska Hospital
Brought the first minicomputer to the Karolinska Hospital (PDP 11/03)
Outside the academic world:
2001 - 2002
1999 - 2006
Senior advisor, text-mining for Virtual Genetics AB.
Founder of the Biotechnology company ViscoCheck AB
Scholarships and Awards
1986 Swedish Natural Science Research Council post-doc scholarship in physics and
mathematics, 1986 Sweden - America Foundation scholarship in medicine, 1983 Siemens Elema scholarship in Neurophysiology.
Other Professional Activities
2007 Swedish Research Council representative in Biobanking for Europe
2006 Member of the P3G board
2006Co-director of the LifeGene initiative, www.lifegene.se
2009 - 2010 BISC (Biobank Infrastructure Committee), VR (The Swedish Research Council)
2003 - 2010 Director of Informatics, Karolinska Institutets biobank
2005 - 2009 Workgroup leader in the FP6 framework; Coordination Action; Harmonizing
population-based biobanks and cohort studies to strengthen the foundation of
European biomedical science in the post-genome era
2003 - 2008 International workgroup leader in P3G (IWG2)
2003 - 2007 Member of the EU Network of Excellence in Semantic Mining
2003 - 2007 Steering group GenomEUTwin
2002 - 2004 Steering group Medical Informatics, Karolinska Institutet
1999 - 2001 Steering group Human Brain Informatics (HUBIN).
1993 - 1999 International Advisory Board, Hungarian PET Center
1977 - 1991 Member of the Advisory Board, Karolinska Center for PET studies.
1983 - 1990 Chairman, Karolinska Institutet´s Union for Engineering.
1982 - 1986 1988-1990 Member of the SACO/SR Council, Karolinska Institutet.
1982 - 1984 Member of the Board for Swedish Biomedical Engineering.
1985
Created the first “Internet” connection at the Karolinska Hospital
1977
Brought the first minicomputer to the Karolinska Hospital (PDP 11/03)
Outside the academic world:
2001 - 2002
1999 - 2006
Senior advisor, text-mining for Virtual Genetics AB.
Founder of the Biotechnology company ViscoCheck AB
8. Supervised Ph D students
Christin Bexelius; E-epidemiology – Adapting epidemiological methods for the 21st century, 2009
Alexandra Ekman; The use of World Wide Web in epidemiology research, 2006
Arne Åhlin, Cholinergic Mechanism in Alzheimer´s dementia, Karolinska Institutet, 1995
Peter Jonström, 1 Radiolabelling with fluorine-18 , Karolinska Institutet, 1995
Svante Nyberg, PET studies on central receptor binding in relation to clinical pharmacology of
antipsychotic drugs, Karolinska Institutet, 1995.
Anna-Lena Nordström, PET evaluation of Dopamin hypothesis for antipsychotic drugs and
schizophrenia, Karolinska Institutet, 1993.
Ivanka Savic, Benzodiazepine receptors in partial and generalized epilepsy, Karolinska Institutet,1992.
Gustav Wik, Regional brain energy metabolism in healthy volunteers, alcohol-dependent men
and schizophrenic patients, Karolinska Institutet, 1990.
Anders Persson, Benzodiazepine receptor binding in the human brain, Karolinska sjukhuset, 1989.
Lars Farde, Dopamine receptor characteristics in the living human brain, Karolinska Institutet,1987.
Ben Castello at Lawrence Berkeley Laboratory, California, USA, in the project: Search for new
scintillators, 1986-1987.
Supervised Post doctoral students
Main supervisor for Dr. Alexandra Ekman, The LifeGene project, 2007-2009
Main supervisor for Dr Ruslan Fomkin, The Federated Database, 2009Teaching qualifications
Course in “Universitets pedagogik” , Karolinska Institutet, 24/9-28/9, 1990.
Course in library- and documentation technique , Karolinska Institutet, 18/4-27/4-1979.
Patents
Jan-Eric Litton: PCT/SE00/01458 - “A Viscometer for measuring a non-newtonian fluid.”
Jan-Eric Litton: SE/0100030-6/ - “Method and arrangement for measuring characteristics of a
blood sample.”
Jan-Eric Litton et al. (WO/2005/026698) An Arrangement In a Rheometer and a Container for use
in a Rheometer
Invited presentations to peer-reviewed, internationally established conferences and/or
international advanced schools.
How the flood of data can be handled in the future? Plenary, Data-driven Medicine, Paths from
Great research to Big Business, April 6, 2011, Tampere, Finland.
Biomedicine as a data-driven science – challenges to information technology, Annual Conference
of the TMF - Keynote address. Munich, April 15, 2010.
E-epidemiology. 1st Asian Network for Research Resource Center (ANRRC) and Asian Chapter
Meeting of ISBER. Seoul, South Korea, Sept 25, 2009.
Database harmonization and IT infrastructure. BBMRI Stakeholder’s Forum, Brussels, Belgium.
Sept 16, 2009.
E-epidemiology – adapting epidemiological research to the 21st century. Bio21. Melbourne, AU,
August 19, 2009.
Biogrid: federating technology: Linkage between clinical data, drugs and genomics. HIC 2009,
Canberra, AU, August 19 2009.
Building an International Biobanking Community (Panel discussant), Harmonizing Biobank
Research: Maximising Value – Maximising Use. Brussels, Belgium, March 27, 2009.
Harmonization of IT infrastructure across countries. Biobanks: Introduction and Next Steps, Sant
Feliu de Guixols, Spain, Nov 1-6, 2008.
E-epidemiology—adapting epidemiological data collection to the 21the century. Medicine 2.0:
Social Networking and Web 2.0 Applications in Medicine and Health, Toronto, ON, Sept 4-5,
2008.
Wedding Epidemiology and Informatics. Banking for the Future, A Workshop on Best Practices in
Biobanking. Brown University, Providence, RI. April 30 2008.
Integrating complex, multisite biological and biobanking databases through a virtual warehouse
model. 4th Annual CMSB Symposium. Leiden, The Netherlands. September 7, 2007.
Current and Future Challenges of Informatics. Biobank in the 21st Century: Cooperation and
Perspectives. to launch the Taiwan Biobank. International conference. Taipei, Taiwan. August 1315, 2007.
The LifeGene project: progress and pitfalls. Research Program Planning Meeting for Proposed
birth cohort study. Cape Town, South Africa. July 16-17, 2007.
Biobanking in relation to clinical information. Euromedlab, Amsterdam, The Netherlands. June 6,
2007.
Federation of Life Science Data. National University of Singapore. May 29, 2007.
Federation of Life Science Data. ISBER (Int’l Society for Biological and Environment
Repositories), Singapore. May 29-30, 2007.
Database/harmonization and biocomputing. European Research Infrastructure Bio-Banking and
Biomolecular Resources: Partner and Stakeholder Meeting. Vienna, Austria, March 17, 2007
Biobank Information Management System: Introduction to Data Integration. European Science
Foundation, Population Survey and Biobanking, Amsterdam, The Netherlands. December 6-8,
2006.
Development of IT tools and infrastructure to enable E-Epidemiology – progress, problems and
opportunities. Bio-Health Conference, Manchester, UK. December 5, 2006.
The Internet as a Tool in Population-Based Epidemiological Studies. 11th Wold Congress on
Internet in Medicine, Toronto, Ontario, Canada. October 14-19, 2006.
Information-based-Medicine. Academic Days Conference, Barcelona, Spain. May 9-10, 2006.
Enabling Infrastructure for Large Public Projects. Genomes to Systems, Manchester International
Convention Centre, England. March 22-24, 2006.
BIMS in a European perspective, Modern Concepts of Population Based Biobanks and Health
Surveys at HUNT Biobank, Levanger, Norway. January 26-27, 2006.
Web-based questionnaire in population-based epidemiological studies. Modern Concepts of
Population Based Biobanks and Health Surveys at HUNT Biobank, Levanger, Norway. January
26-27, 2006.
Karolinska Institute Biobank: Enabling Infrastructure Including High Throughput Phenotyping
Technologies. Bioinformatics Grand Rounds: NRB Amphitheater, Harvard Medical School,
Boston, MA, USA. September 29, 2005.
Biorepository Informatics Systems. NCI Symposium: International Harmonization of
Biorepositrory Practices, Washington DC, USA. November 10, 2005.
Data collection and management, Meeting of the Asia Cohort Consortium and Workshop on
Obesity, Insulin Resistance, and Physical Activity, Fred Hutchinson Cancer Research Center
(FHCRC), Seattle, Washington. April 14-15, 2005.
International Biobank and Cohort Studies: Developing a Harmonious Approach, CDC, Atlanta;
GA, USA. February 7, 2005.
P3G and Standards, International Biobank and Cohort Studies: Developing a Harmonious
Approach, CDC, Atlanta; GA, USA. February 8, 2005.
1
APPENDIX B – CV
LARS RYLANDER (born 1964)
1. Basal education
BSc (statistics/mathematics) 1991, Lund University.
2. PhD Thesis
Date: March 7, 1997.
Affiliation: Department of Occupational and Environmental Medicine, Institute of
Laboratory Medicine, Faculty of Medicine, Lund University
Supervisors: Professors Lars Hagmar and Ulf Strömberg, Lund University,
Title: Dietary exposure to persistent organochlorine compounds and health effects in
women and their infants - Epidemiological studies on birthweight, cancer incidence,
and mortality.
3. Post docs
None
4. Associate professor (docent)
In Occupational and Environmental Epidemiology, University of Lund, 2001
6-7. Present and recent professional appointments
- Researcher (since 2006) / Senior lecture (2003-2006) / Research Engineer (1991-1997)
in Occupational and Environmental Epidemiology, Lund University
- Chief epidemiologist at Occupational and Environmental Medicine, Lund University
Hospital 1997-2009 (leave of absence 2003-2009).
8. Paternal leave:
6 months during 2001-2002; 2 months during 2004; 4 month during 2005, 2 months
during 2006. (in total 14 months)
9. Scientific supervision
Finished (Lars Rylander was associated supervisor)
- Hannah Nenonen (Dr.Med.Sc., presented the thesis in April 2011), Department of
Molecular Reproductive Medicine, Lund University, Sweden.
- Anna Axmon (Dr.Med.Sc., presented the thesis in March 2003), Department of
Occupational and Environmental Medicine, Lund University, Sweden.
- Anna Rignell-Hydbom (Dr.Med.Sc, presented the thesis in May 2005), Department of
- Jonas Richthoff (Dr.Med.Sc, presented the thesis in April 2007), Department of
Molecular Reproductive Medicine, Lund University, Sweden.
- Tarmo Tiido (Dr.Med.Sc, presented the thesis in May 2007), Department of Molecular
Reproductive Medicine, Lund University, Sweden.
- Ewa Wallin (Lic.Med.Sc., presented the thesis in February 2005), Department of
On-going (Lars Rylander as main supervisor)
2
- Ebba Malmqvist (PhD student at The Division of Occupational and Environmental
Medicine, Lund University, Sweden since November 2009).
- Kerstin Nilsson (PhD student at The Division of Occupational and Environmental
Medicine, Lund University, Sweden since April 2009).
On-going (Lars Rylander as assistent supervisor)
- Christel Björk (PhD student at Department of Molecular Reproductive Medicine,
Lund University, Sweden since 2008).
- Jonatan Axelsson (PhD student at Department of Molecular Reproductive Medicine,
Lund University, Sweden since 2009).
Others
Scientific publications
112 published international original peer-review papers, 28 full length published
abstracts, 97 other conference abstracts and 6 reports (in Swedish) from the Department
of Occupational and Environmental Medicine.
Collaborations
Continuous collaborations with PhD-researchers. Have for instance participated in two
project financed by the EU (INUENDO – Human risk for biopersistent organochlorine
in the environment [http://www.inuendo.dk/], and COMPARE [http://www.compareproject.info/]) and participate in the on-going project CLEAR
(http://www.inuendo.dk/clear/).
Work package leader within the following projects:
- SIMSAM Early Life, a research project within the Swedish Initiative for research on
Microdata in the Social and Medical Sciences, supported by grants from the Swedish
Research Council. [http://www.med.lu.se/simsam_early_life]
- METALUND, a FAS-centre of excellence and research school Centre for Medicine
and Technology for Work Life and Society at Lund University
[http://www.metalund.lu.se/]
Member of (among others):
- The toxicologival council at Swedish Chemicals Agency (ToxRåd)
(http://www.kemi.se/templates/Page____3932.aspx)
- The board regarding the network NordFluor financed by the NorForsk
(http://nordfluor.nilu.no/)
- The board in the Swedish Epidemiological Society (secretary 1998-1999, treasurer
2000-2004, resposible for SVEP’s home page 1998-2003 and programme at
Läkarstämman 2001-2004).
Educational experience
- Continuously involved at the Programme for medical training at Lund University as a
course leader/lecturer/seminar tutor since 1993
- Responsible at three occasions for the five weeks course in Environmental epidemiology at the Programme for Biomedical Laboratory Science, at the University of Kalmar.
- Continuously lectures in epidemiology/environmental epidemiology/biostatistics at the
Lund Institute of Technology, Halmstad University and Kristianstad University.
1
Mats G. Hansson, BSc, ThD, born 1952, CV April 2011
1. Undergraduate degrees
1975, Biology BA, Uppsala University
1979, Theology, Diploma Lidingö Theological Seminary
2. Graduate degree
1991, Ethics, ThD, Uppsala University. Title: Human dignity and animal welfare. A
Kantian contribution to biomedical ethics. Supervisor: Ragnar Holte.
3. Post Doc
1991 Hastings Center, New York, 1992 Ersta Institute for Health Care Ethics 1992
1995
5. Present position
Professor of Biomedical Ethics at Uppsala University
Centre for Research Ethics and Bioethics,
Department of Public Health and Caring Sciences
Uppsala University
6. Recent positions
Director, Centre for Research Ethics and Bioethics at Uppsala University 2008Member of the Scientific Advisory Committee of The Swedish Council of
Technology Assessment in Health Care (SBU) 2009Visiting Professor at Newcastle University 2009
Director, Centre for Bioethics at Karolinska Institutet and Uppsala University
2004-2008.
Program Director, ELSA-National Research Program, 1999-2004
Program Director, Ethics in Biomedicine, Uppsala University, 1998-2004
Deputy Head of Dept of Public Health and Caring Sciences, Uppsala University,
2003Member Graduate Committee, Domaine of Medicine&Pharmacy,Uppsala
University 2003Principal Secretary, Parliamentary Commission of Research Ethics, 1997-99
President and Dean, Stockholm School of Theology, 1994-1996
Awards and memberships
Research awards as principal investigator of 15 multi-disciplinary research
projects between 1998-2010, and wp-leader in 3 EU-projects in total: 29 000 000
SKr.
Elected Fellow, Lichtenberg-Kolleg, Göttingen, 2011
Elected Fellow of The Hastings Center, New York, 2009
Elected member, The Royal Academy of Arts and Sciences of Uppsala, 2001
Elected member, The Royal Swedish Academy of Agriculture and Forestry, 1998
8. PhD supervision
Supervision of PhD-students: Malin Masterton (completed May 2010), Linus
Johnsson, Ashkan Atry, Joanna Forsberg, Li Jalmsell (all ongoing)
2
CV Staffan Lindblad 2011-04-18
1. Professional education
Karolinska Institutet, Stockholm, Sweden, Medicine bachelor 1970, master 1974.
2. Doctoral thesis 1987, Doctor of Medical Science, Ph.D, Medicine / rheumatology,
Karolinska Institutet;
Arthroscopic and Immunohistopathologic Characterization of the Synovial Membrane
in Rheumatic Diseases
Supervisor professor Eva Hedfors
3. Postdoctoral visits
Otago University, Dunedin, New Zealand, Medicine postdoc position 1988-89.
4. Associate professor / Docent
2007, Rheumatology, Karolinska Institutet
5. Current appointments
Lecturer (universitetslektor), Medical Management Center, Dept. of Learning,
Informatics, Management, Ethics, Karolinska Institutet, tenure since 2007-06-13
Currently 80% research.
Consultant in rheumatology (överläkare), Dept of Rheumatology, Karolinska university
hospital, tenure since 1994-01-01
6. Previous academic appointments
930301-990701
Senior Lecturer in rheumatology
Unit for Rheumatology, Dept of
Medicine, Karolinska hospital,
020101-070612
Senior Researcher,
Medical Management Centrum,
Dept of Learning, Informatics, Management
and Ethics, Karolinska Institutet
8. Doctoral students graduated as main supervisor
• Jesper Olsson, 2005; Factors for successful improvement in Swedish health
care.
• Cheryl Carli, 2008; Exploring a national practicebased register for the
management of rheumatoid arthritis.
Participation in quality register organizations
• Founder and head of the Swedish Quality register in Rheumatology since
1996.
• Chairman Swedish Rheumatology Registers, a network for all patientdata
registers in Swedish rheumatology under the auspices of the Swedish
Association for Rheumatology.
• Project leader of the CUR project – Clinical development Utilizing Registers
comminssioned by the Ministry of Enterprise 2009 – 2010.
• Head of the R&D unit at the Quality Register center of Stockholm founded
2010.
Curriculum Vitae, Staffan Lindblad 2011-04-18
1
Urban Lindgren
660219-8514
B.A. in Human Geography (1991).
2. Graduate studies
Ph.D. in Human Geography 1997; Title of thesis: Local Impacts of Large Investments;
Supervisor: Prof. Einar Holm (Ph.L. in Human Geography 1994).
3. Post doc
Würzburg, Germany (1998).
2004
5. Current position
Professor (2008- ) at the Department of Social and Economic Geography, no regulated time
for research within the contract of employment. For the time being external funding amounts
to circa 75%.
Senior lecturer (2000-2008) at the Department of Social and Economic Geography,
Lecturer (1998-1999) at the Department of Social and Economic Geography
7. –
8. Supervision of doctoral students
I have been main supervisor for two graduated PhD-students and assistant supervisor for five
graduated PhD-students. Currently, I am the main supervisor for three PhD students. I have
also contributed to interdisciplinary projects by co-authoring papers used in PhD-theses
presented in other disciplines.
Main supervision
Ongoing
Ongoing
Ongoing
2010
Mats Borrie, starting his postgraduate studies in 2009
Lisa Östbring, starting her postgraduate studies in 2008
Peter Linder, starting his postgraduate studies in 2008
Madeleine Eriksson, (Re)producing a periphery: popular representations of the
Swedish North.
Kungliga Skytteanska Samfundets Handlingar: 66.
2009
Rikard Eriksson, Labour Mobility and Plant Performance – The influence of
proximity, relatedness and agglomeration
Based on his PhD-thesis, RE received The Regional Studies Association’s
Early Career Award 2010.
Assistant supervision
Susanne Hjort, Socio-economic Differentiation and Selective Migration in Rural
and Urban Sweden
2007
Wenjuan Li, Firms and People in Place – Driving Forces for Regional Growth
2005
Fredrik Brandt, Botniabanan – Förväntningar i tid och rum på regional utveckling
och resande
2005
Susanne Hjort, Rural Migration in Sweden (licentiate thesis)
2004
Marianne Öhman, Long Distance Weekly Commuting (licentiate thesis)
2002
Örjan Pettersson, Socio-Economic Dynamics in Sparse Regional Structures
Assistance in PhD-projects at other university departments and universities.
Occasionally I have contributed to interdisciplinary projects by co-authoring papers used
in PhD theses presented in other disciplines.
2009
2010
Eva Lindgren, Driving From the Centre to Periphery? – The diffusion of private
2005
2005
cars in Sweden 1950-2000 with focus on 1960-1975. Department of Economic
History, Umeå University.
Helena Elmquist, Environmental and Economic Impacts of Decision-Making at an
Arable Farm: An Integrative Modelling Approach. The Department of Biometry
and Engineering, Swedish University of Agricultural Sciences, Ultuna.
Eva Lindgren, GIS for Writing: Applying Geographical Information Systems
Techniques to Data Mine Writings’ Cognitive Processes. Department of Modern
Languages, Umeå University.
9. Research funding 20022011-2014
Director of the project Arbetskraftsrörlighet och företagens
konkurrensförmåga - Den geografiska närhetens betydelse för
spillövereffekter och kunskapsflöden funded by FAS.
3 000 000 SEK
2011-2014
Director of the project Arbetskraftsvillkor och
konkurrensförmåga – Betydelsen av kunskpasspridning och
geografisk närhet funded by VR.
2 769 000 SEK
2010
Strong research environments at Umeå University: The
Umeå SIMSAM Network via Epidemiology and Global
Health one of fourteen selected environments.
2010
Strong research environments at Umeå University: The
Umeå group of mobility studies via Ageing and Living
Conditions one of fourteen selected environments.
2009-2012
Co-director of the project Matchning för tillväxt funded by
Vinnova (together with Einar Holm, Umeå University).
3 200 000 SEK
2009-2012
Awarded “Umeå University’s Young Researcher Award”
(Karriärbidrag).
2 000 000 SEK
2009-2013
Co-director of the project Microdata research on childhood and
lifelong health and welfare – The Umeå SIMSAM Node funded
by VR (together with Anneli Ivarsson, Dept. of Public
Health and Clinical Medicine; Xavier de Luna, Dept. of
Statistics; Karina Nilsson, Dept. of Sociology; and Ingvar
Bergdahl, Dept. of Occupational Medicine).
28 800 000 SEK
2008-2009
Co-director of the project Participatory democracy and decision
legitimacy in systems of multi-governance funded by SKB
(together with Carina Keskitalo and Annika Nordlund,
Umeå University).
1 000 000 SEK
2007-2009
Co-director of the project Arbetspendling och regionförstoring –
effecter på inkomster, inkomstfördelning och familjeförändring
funded by FAS (together with Olle Westerlund, Umeå
University)
1 900 000 SEK
2007-2009
Co-director of the project Geografiska villkor för produktivitet
och sysselsättning – betydelsen av kompetenstillgång,
arbetskraftsrörlighet och regionförstoring funded by Vinnova
(together with Einar Holm, Umeå University)
5 400 000 SEK
2006-2007
Director of the project Socioekonomiska effekter av ett slutförvar
för radioaktivt avfall i Östhammar och Oskarshamn funded by
SKB
218 000 SEK
2006
Director of the project Nordanstig i gränslandet mellan två
större arbetsmarknadsregioner funded by Nordanstig
municipality
100 000 SEK
2004-2006
Director of the project Långsiktiga socioekonomiska effekter av
stora investeringar på små och medelstora orter funded by SKB
1 790 000 SEK
Kod
2011-36596-89497-29
Name of applicant
Stenbeck, Magnus
Date of birth
510503-1032
Appendix C
List of publications
VRAPS/VR-Direct bilaga 2004.Ce
1
Magnus Stenbeck Scientific production since 2002
1a Published papers in peer reviewed journals
Peer reviewed original articles
1. Verschuuren M, Badeyan G, Carnicero J, Gissler M, Asciak R, Sakkeus L, Stenbeck, M,
Deville, W. The European data protection legislation and its consequences for public
health monitoring: a plea for action. European Journal of Public Health 2009;18(6):5501.
2. Stenbeck M, Hagquist C, Rosén M. The association of snus and smoking behaviour: a
cohort analysis of Swedish males in the 1990's. Addiction 2009 Sep;104(9):1579-85.
3. Haglund B, Eliasson M, Stenbeck M, Rosén M. Is moist snuff associated with excess
risk of IHD or stroke? A longitudinal follow-up of snuff users in Sweden. Scandinavian
Journal of Public Health 2007;35(6):618-22.
4. Törnberg S, Kemetli L, Svane G, Rosén M, Stenbeck M, Nyström L. Patterns of
participation in a cohort aged 50-60 years at first invitation to the service-screening
programme with mammography in Stockholm county, Sweden. Preventive Medicine
2005;41:728 - 33.
5. Lindqvist R, Stenbeck M, Diderichsen F. Does hospital discharge policy influence sickleave patterns in the case of female breast cancer? Health Policy 2005;72(1):65 - 71.
6. Talbäck M, Stenbeck M, Rosén M. Up-to-date long-term survival of cancer patients: an
evaluation of period analysis on Swedish Cancer Registry data. European Journal of
Cancer 2004;40(9):1361 - 72.
7. Talbäck M, Rosén M, Stenbeck M, Dickman PW. Cancer patient survival in Sweden at
the beginning of the third millenium - predictions using period analysis. Cancer Causes
and Control 2004;15:967 - 76.
8. Lindqvist R, Alvegard TA, Jönsson PE, Stenbeck M. Hospital stay related to TNM-stage
and the surgical procedure in primary breast cancer. Acta Oncologica 2004;43(6):545 50.
9. Talbäck M, Stenbeck M, Rosén M, Barlow L, Glimelius B. Cancer survival in Sweden
1960 - 1998. Developments across four decades. Acta Oncologica 2003;42(7):637 - 59.
10. Wennborg H, Bonde J, Stenbeck M, Olsen J. Adverse reproduction outcomes among
employees working in biomedical research laboratories. Scandinavian Journal of Work,
Environment, and Health 2002(1):5 - 11.
11. Rosén M, Lindqvist R, Stenbeck M. Revise the review process of the Cochrane
collaboration. Scandinavian Journal of Public Health 2002;30(3):238 - 9.
12. Lindqvist R, Möller T, Stenbeck M, Diderichsen F. Do changes in surgical procedures
for breast cancer have consequences for hospital mean length of stay? A study of
women operated on for breast cancer in Sweden, 1980-95. International journal of
technology assessment in health care 2002;18(3):566 - 75.
13. Duffy SW, Tabar L, Chen H, Holmqvist M, Yen M, Abdsala F, Epstein B, Frodis E,
Ljungberg E, Hedborg-Melander C, Sundbom A, Tholin M, Wiege M, Åkerlund A, Wu
HM,Tung TS,Chiu YH,Chiu CP,Huang CC, Rosén M, Smith RA, Stenbeck M,
Holmberg L. The impact of organized mammography service screening on breast
carcinoma mortality in seven Swedish counties. Cancer 2002;95(3):458 - 69.
Articles in supplements of peer reviewed journals
14. Stenbeck M, Hjern A. Social consequences of illness International Journal of Social
Welfare2007;16(Supplement 1):S105-S26.
15. Stenbeck M, Persson G. Working life, work environment, and health. Scandinavian
Journal of Public Health Supplement2006;67:229 - 45.
16. Stenbeck M. Illness and social situation. International Journal of Social Welfare.
[Original]. 2002;11(Supplement):61 - 6.
Book chapters/sections
17. Talbäck M, Hakulinen T, Stenbeck M. Cancerförekomst. Onkologi. Stockholm: Liber;
2008. p. 17-25.
18. Stenbeck M. Otis Dudley Duncan. Encyclopedia of Social Measurement: Elsevier
Inc.; 2005. p. 691 - 7.
Reports from conferences and papers in conference proceedings
19. Petersen S, Bergström E, Cederblad M, Ivarsson A, Köhler L, Rydell A-M, Stenbeck
M, Sundelin C, Hägglöf, B. Barns och ungdomars psykiska hälsa i Sverige. En
systematisk litteraturöversikt med tonvikt på förändringar över tid. . Konferens om
Trender i barns och ungdomars psykiska hälsa; 2010-04-12--14; Stockholm, Sweden:
Royal Academy of Science.
20. Fomkin R, Stenbeck M, Litton J-E. Federated Databases as a Basis for Infrastructure
Supporting Epidemiological Research. In: DEXA: 20th International Workshop on
Database and Expert Systems Application 2009. p. 313-17.
Publications Anna Rignell-Hydbom
Theses
2005 Doctor in Medical Science, Occupational and Environmental Medicine
Lund University, Sweden. Exposure to persistent organochlorine pollutants and male
semen function.
1. Original Publications peer-reviewed publication
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
Rignell-Hydbom A, Rylander L, Giwercman A, Jonsson BA, Nilsson-Ehle P, Hagmar
L. Exposure to CB-153 and p,p'-DDE and male reproductive function. Hum Reprod.
2004; Sep19(9):2066-2075.
Rignell-Hydbom A, Rylander L, Giwercman A, Jonsson BA, Lindh C, Eleuteri P,
Rescia M, Leter G, Cordelli E, Spano M, Hagmar L. Exposure to PCBs and p,p'-DDE
and human sperm chromatin integrity. Environ Health Perspect. 2005; Feb113 (2):175179.
Tiido T, Rignell-Hydbom A, Jonsson B, Giwercman YL, Rylander L, Hagmar L,
Giwercman A. Exposure to persistent organochlorine pollutants associates with human
sperm Y:X chromosome ratio. Hum Reprod. 2005; 20:1903-1909.
Rignell-Hydbom A, Rylander L, Elzanaty S, Giwercman A, Lindh CH, Hagmar L.
Exposure to persistent organochlorine pollutants and seminal levels of markers of
epididymal and accessory sex gland functions in Swedish men. Hum Reprod. 2005;
20:1910-1914.
Toft G, Rignell-Hydbom A, Tyrkiel E, Shvets M, Giwercman A. Quality control
workshops in standardization of sperm concentration and motility assessment in
multicentre studies. Int J Androl. 2005; 28(3):144-149.
Spano M, Toft G, Hagmar L, Eleuteri P, Rescia M, Rignell-Hydbom A, Tyrkiel E,
Zvyezday V, Bonde JP and INUENDO. Exposure to PCB and p,p´-DDE in European
and Inuit populations: impact on human sperm chromatin integrity. Human Reprod.
2005;20:3488-3499.
Axmon A, Rignell-Hydbom A. Estimation of past male and female serum
concentrations of biomarkers of persistent organochlorine pollutants (POPs) and their
impact on fecundability estimates. Environmental Research 2006; 101: 387-394.
Axmon A, Rignell-Hydbom A, Pedersen HS, Zvyezday V, Ludwicki JK, Jönsson
BAG, Toft G, Thulstrup A-M, Bonde J-P, Hagmar L, INUENDO. Time to pregnancy
as a function of male and female serum concentrations of 2,2´4,4´5,5´hexachlorobiphenyl (CB-153) and 1,1-dichloro-2,2-bis (p-chlorophenyl)-ethylene
(p,p’-DDE). Human Reprod 2005; 21:657-665.
Axmon A, Rignell-Hydbom A. Biomarkers of exposure to persistent organochlorine
compounds. Chemosphere 2006; 64:692-694.
Jönsson BAG, Rylander L, Lindh C, Rignell-Hydbom A, Giwercman A, Toft G,
Pedersen S.H, Ludwicki J.K, Góralczyk K, Zvyezday V, Spanò M, Bizzaro D,
Bonefeld-Jörgensen E.C, Manicardi GC, Bonde JP, Hagmar L, and INUENDO.
Country specific serum concentrations, and determinants of 2,2’,4,4’,5,5’hexachlorobiphenyl (CB-153) and 1,1-dichloro-2,2-bis (p-chlorophenyl)-ethylene
(p,p’-DDE) in a cross-sectional study of 3161 men and women from Inuit and
European populations. Environmental Health 2005; 11:4:27.
11.
12.
13.
14.
15.
16.
17.
18.
19.
20.
21.
Toft G, Axmon A, Giwercman A, Thulstrup AM, Rignell-Hydbom A, Sloth Pedersen
H, Ludwicki J K, Zvyezday V, Zinchuk A, Spano M, Manicardi GC, BonefeldJørgensen E C, Hagmar L, Bonde JP and INUENDO. Fertility in four regions spanning
large contrasts in serum levels of widespread persistent organochlorines: a crosssectional study. Environmental Health 2005; 9;4:26.
Rylander L, Rignell-Hydbom A, Hagmar L. A cross-sectional study of the association
between persistent organochlorine pollutants and diabetes. Environmental Health 2005;
4:28.
Toft, G, Rignell-Hydbom A, Tyrkiel, E, Shvets, M, Giwercman, A, Lindh, C.H.
Pedersen, H.S, Ludwicki, J.K, Zvyezday, V, Hagmar, L, Spanó M, Manicardi, G.C,
Bondefeld-Jorgensen E.C, Thulstrup, A.M, Bonde, J.P, INUENDO. Semen quality and
exposure to persistent organochlorine pollutants. Epidemiology 2006; 17: 450-458.
Tiido T, Rignell-Hydbom A, Jönsson BAG, Lundberg Giwercman Y, Pedersen HS,
Ludwicki JK, Shevts M, Zvyesday Y, Toft G, Bonde JP, Rylander L, Hagmar L.
Impact of regional differences in PCB and p,´-DDE exposure on human sperm X:Y
chromosome ratio: study on three European populations and the Inuit population in
Greenland. Environ Health Perspective 2005; 20;1903-1009.
Elzanaty S, Rignell-Hydbom A, Jönsson BAG, Lundberg Giwercman Y, Pedersen HS,
Ludwicki JK, Shetvs M, Zvyesday V, Toft g, Bonde JP, Rylander L, Hagmar L,
Giwercman A. Associations between exposure to persistent organohalogen pollutants
and epididymal and accessory sex gland function: multicentre study in Inuit and
European populations. Reprod Toxicol 2006; 22:765-773.
Stronati A, Manicardi GC, Cecati M, Bordicchia M, Ferrante L, Spanò M, Toft G,
Bonde JP, Hagmar L, Jönsson B, Rignell-Hydbom A, Rylander L, Giwercman A,
Pedersen HS, Bonefeld-Jørgensen EC, Ludwicki JK, Zvyezday V, Sakkas D and
Bizzaro D. Relationships between sperm DNA fragmentation, sperm apoptotic markers
and serum levels of CB-153 and p,p´-DDE in European and Inuit populations.
Reproduction 2006; 132: 949-958.
Toft G, Bonde JP, Long M, Krüger T, Hjelmborg P, Sinnathamby T, Rignell-Hydbom
A, Tyrkeil E, Shwets M , Hagmar L, Giwercman A, Spanó M, Manicardi G-C,
Pedersen H, Zwesday V, Ludvicki JK, Bonefeld-Jorgensen EC, INUENDO. Semen
quality in relation to xenohormone and dioxin-like activity among Inuit and three
European populations. Environ Health Perspect 2007 Dec;115 Suppl 1:15-20.
Kruger T, Hjelmborg PS, Jönsson BAG, Hagmar L, Giwercman A, Manicardi GC,
Bizzaro D, Spano M, Ludvicki JK, Rignell-Hydbom A, Toft G, Bonde JP, BonefeldJorgensen E C Xenoandrogenic activities in serum across European and Inuit
populations. Environ Health Perspect. 2007 Dec;115 Suppl 1:21-7.
Rignell-Hydbom A, Rylander L, Hagmar L. Exposure to persistent organochlorine
pollutants and type 2 diabetes mellitus. Human & Experimental Toxicology 2007; 26:
447-452.
Giwercman A, Rylander L, Rignell-Hydbom A, Jönsson BAG, Pedersen HS,
Ludwicki JK, Lesovoy V, Zvyezday V, Spano M, Manicardi G-C, Bizzaro D,
Bonefeld-Jørgensen E,Toft G, Bonde JP, Hagmar L, Lundberg Giwercman Y and
INUENDO. Androgen receptor gene CAG repeat length as modifier of the effect of
Persistent Organohalogen Pollutant exposure markers and semen characteristics.
Pharmacogenetics and Genomics 2007;17:391-401.
Giwercman A, Rignell-Hydbom A, Rylander L, Spano M, Toft G, Bonde JP, Bizarro
D, Pedersen H, Jönsson BAG, Hagmar L. 2006. Reproductive Hormone Levels in Men
Exposed to Persistent Organohalogen Pollutants: A Study of Inuit and Three European
Cohorts. Environ Health Perspect 2006; 114: 1348-1353.
22.* Rignell-Hydbom A, Axmon A, Lundh T, Tiido T, Jönsson BAG, Spano M. Semen
quality and quantity and the association with serum levels of methyl mercury and
possible interaction with PCB. Environmental Health 2007;6:14.
23. Rignell-Hydbom A and Axmon A. Serum concentrations of PCB and DDE in relation
to gestational length and preterm birth. (in manuscript)
24. Tiido T, Rignell-Hydbom A, Jönsson B.A.G, Rylander L, Giwercman A, Lundberg
Giwercman Y. Modifying effect of AR gene trinucloetide repeats and SNPs in the AHR
and AHRR on the association between POP exposure and human sperm Y:X ratio.
Molecular Human Reproduction 2007;13:223-229.
25. Axmon A, Rylander L, Rignell-Hydbom A. Reproductive toxicity of seafood
contaminants : prospective comparisions of Swedish east and west coast fishermans
families. Environ Health. 2008 May 28;7:20.
26. Bonde JP, Toft G, Rylander L, Rignell-Hydbom A, Giwercman A, Spano M,
Manicardi C, Bizzaro D, Ludwicki JK, Zvyezday E, Bonefeld-Jorgensen EC. Sloth
Pedersen H, Jönsson BAG, Thulstrup AM and INUENDO Fertility and Markers of
male reproductive function in Inuit and European populations spanning large contrasts
in blood levels of persistent organochlorines Environ Health Perspect 2008;116: 269277.
27.* Rantakokko P, Kiviranta H, Rylander L, Rignell-Hydbom A, Vartiainen T.A simple
and fast liquid-liquid extraction method for determination of 2,2´4,4´5,5´hexachlorobiphenyl (CB-153) and 1,1-dichloro-2,2-bis (p-chlorophenyl)-ethylene
(p,p’-DDE) from human serum for epidemiological studies on type 2 diabetes. J
Chromatogr A. 2009;6:897-901.
28. Rignell-Hydbom A, Skerfving S, Lundh T, Lindh CH, Elmsthål S, Bjellerup P,
Jönsson BAG, Strömberg U, Åkesson A. Exposure to cadmium and persistent
organochlorine pollutants and its association with bone mineral density and markers of
bone metabolism on postmenopausal women. Environ Res 2009, 109: 991-996.
29*
Rignell-Hydbom A, Lidfeldt J, Kiviranta H, Rantakokko P, Samsioe G, Agardh C-D,
Rylander L. Exposure to p,p’-DDE: A risk factor for type 2 diabetes. PLoS ONE 2009
19; 4:7503.
30.* Rignell-Hydbom A, Elfving M, Ivarsson SA, Lindh C, Jönsson BAG, Olofsson P,
Rylander L. Associations between intrauterne exposure to persistent organochlorine
pollutants and type 1 diabetes: a case-control study. PLoS ONE 2010;5:1-6.
31
Malmqvist E, Rignell-Hydbom A, Tinnerberg H, Björk J, Stroh E, Jakobsson K,
Rittner R, Rylander L. Maternal exposure to air pollution and birth outcomes. Environ
Health Perspect 2011 Jan 6 Epub ahead of print.
32
Axelsson J, Rylander L, Rignell-Hydbom A, Giwercman A. No secular trend over the
last decade in sperm counts among Swedish men from the general population. Human
Reprod 20011 Mar 7 [Epub ahead of print]
2. Referee-bedömda konferensbidrag
Rignell-Hydbom A, Rylander L, Giwercman A, Jonsson B, Hagmar L. Serum
levels of 2,2´,4,4´,5,5´,-hexachlorobiphenyl in relation to semen quality and
quantity among Swedish fishermen. 23th International Symposium on
Halogenated Environmental Pollutants and POPs. Boston USA Organochlorine
Compounds 2003; Vol 65; pp 261-264.
Rignell-Hydbom A, Rylander L, Giwercman A, Jönsson B, Nilsson-Ehle P och
Hagmar L. Persistenta klororganiska miljögifter och manlig fertilitet. The
Annual General Meeting of the Swedish Society of Medicine, 2004,
Gothenburg, Sweden.
Rignell-Hydbom A, Rylander L, Giwercman A, Jonsson BA, Spano M, Hagmar
L. Exposure to PCBs and p,p'-DDE and human sperm chromatin integrity. 24th
International Symposium on Halogenated Environmental Pollutants and POPs.
Berlin Germany. Organochlorine Compounds 2004; Vol 66; pp 3184-3188.
Tiido T, Rignell-Hydbom A, Jönsson B, Ludwicki J, Toft G, Bonde J. P,
Pedersen H. S, Shvets M, Giwercman Y, Rylander L, Hagmar L and Giwercman
A. Exposure to persistent organohalogen pollutants associates with human sperm
Y: X chromosome ratio. 3rd Copenhagen Workshop on Environment,
Reproductive Health and Fertility 2005 Copenhagen, Denmark.
Rignell-Hydbom A, Rylander L, Giwercman A, Jönsson B, Hagmar L.
Persistenta klororganiska miljögifter och manlig fertilitet. The Annual General
Meeting of the Swedish Society of Medicine, 2005 Stockholm, Sweden.
Krüger T, Hjelmborg P, Goralczyk K, Pedersen HS, Shvets M, RignellHydbom A and Bonefeld-Jørgensen EC. Androgen-like activities in blood
cleared for endogenous steroid hormones across European and Inuit populations.
3rd Copenhagen Workshop on Environment, Reproductive Health and Fertility
2005, Copenhagen, Denmark.
Long M, Andersen BS, Goralczyk K, Pedersen HS, Shvets M, Rignell-Hydbom
A and Bonefeld-Jørgensen EC. Dioxin-like activities in blood across European
and Inuit populations. 3rd Copenhagen Workshop on Environment,
Reproductive Health and Fertility 2005, Copenhagen, Denmark.
Hjelmborg PS, Sinnathamby T, Andersen BS, Goralczyk K, Pedersen HS,
Shvets M, Rignell-Hydbom A and Bonefeld-Jørgensen EC. Estrogen-like
activities in blood cleared for endogenous steroid hormones across European and
Inuit populations. 3rd Copenhagen Workshop on Environment, Reproductive
Health and Fertility, 2005, Copenhagen, Denmark.
Giwercman YL, Bonde JP, Hagmar L, Tiido T, Rignell-Hydbom A. Rylander
L, Toft G, Giwercman A. Androgen receptor CAG repeat modifies the effects of
Persistent Organohalogen Pollutants on reproductive parameters. Molecular
Andrology- International Workshop. 2005, Giessen, Germany.
Toft G, Rignell-Hydbom A, Tyrkiel E, Shevets M, Giwercman A, Hagmar L,
Bonde JP and INUENDO. Semen quality in Greenland, Sweden, Poland and
Ukaraine. 3rd Copenhagen Workshop on Environment, Reproductive Health and
Fertility, 2005 Copenhagen, Denmark.
Spano M, Toft G, Hagmar L, Eleuteri P, Cordelli E, Leter G, Rescia M, Villani
P, Jönsson BAG, Rignell-Hydbom A, Rylander L, Giwercman A, Pedersen HS,
Bonefeld-Jörgensen EC, Manicardi GC, Bizzaro D, Ludwicki JK, Zvyezday V
and Bonde JP. Relationship between sperm chromatin integrity evaluated by the
flow cytometric Sperm Chromatin Structure Assay (SCSA) and dietary exposure
to PCBs and DDT in European populations: The INUENDO project. Italian
Society of Cytometry, 2005, San Benedetto del Tronto, Italy.
Christiansson A, Hovander L, Athanassiadis I, Rignell-Hydbom A, Jakobsson
K, Bergman Å. Swedish researchers had increased PBDE-levels in serum after
intercontinental flights- an explorative´y study. Birmingham. Organohalogen
compounds, volume 70, 2008.
Rignell-Hydbom A, Rylander L. Exponering för persistenta klororganiska
miljögifter och typ 2 diabetes. The Annual General Meeting of the Swedish
Society of Medicine, 2007 Stockholm, Sweden.
Rignell-Hydbom A, Lidfeldt J, Kiviranta H, Rantakokko P, Samsioe G, Agardh
C-D, Rylander L. Persistent organochlorine pollutants. A risk factor for type 2
diabetes. Organochlorine Compounds, volume 71, 2009.
3. Översiktsartiklar
Bo AG Jönsson, Anna Axmon, Anna Rignell-Hydbom, Lotta Hovander, Åke
Bergman. Tidstrender för och halter av persistenta klorerade och bromerade
miljögifter i serum hos svenska unga män- Resultat från en andra
uppföljningsundersökningen år 2006. Rapport till Naturvårdsverket 2008-03-31,
Jönsson BAG, Axmon A, Lindh C, Rignell-Hydbom A, Axelsson J, Givercman
A, Bergman Å. Tidstrender för och halter av persistenta fluorerade, klorerade
och bromerade organiska miljögifter i serum samt ftalater i urin hos svenska
män – Resultat från den tredje uppföljningsundersökningen år 2009-2010.
Rapport till naturvårdsverket 2010-11-19.
6. Populärvetenskapliga presentationer
Kan man få diabetes av miljögifter? Bulletinen nr. 4 2007. Centrum för Yrkes- och miljömedicin
Lund/Malmö.
SIMSAM Early Life - forskning om barn och ungas hälsa. Bulletinen nr:1 2009, Avd. för Arbets- och
miljömedicin & Yrkes- och miljödermatologi Malmö.
Miljgifter och diabetes. Seminarium för journalister om förebyggande medicin. 2009.
Kemikalier – dolt hälsohot i vår vardag. Aktuellt om Vetenskap & Hälsa, nov 2009.
Forskningensdag i Lund och Malmö 2009
Presentation vid Miljödagen vid UMAS 2009 ”Att leva i en värld med miljögifter”.
Bilaga C; Anneli Ivarsson; 581110-3901
PUBLICATIONS (2003 and onwards)
1. Peer-reviewed articles
Ivarsson A, Hernell O, Nyström L, Persson LÅ. Children born in the summer have an
increased risk for coeliac disease. J Epidemiol Community Health 2003;57:36-39.
Ivarsson A, Persson LÅ, Nyström L, Hernell O. The Swedish coeliac disease epidemic with a
prevailing two-fold higher risk in girls compared to boys may reflect gender specific risk
factors Eur J Epidemiol 2003;18:677-684.
Collin P, Kaukinen K, Vogelsang H, Korponay-Szabò I, Sommer R, Schreier E, Volta U,
Granito A, Veronesi L, Mascart F, Ocmant A, Ivarsson A, et al. Antiendomysial and
antihuman recombinant tissue transglutaminase antibodies in the diagnosis of coeliac disease:
a biopsy-proven European multicenter study. Eur J Gastroenterol Hepatol 2005;17:85-91.
Stenhammar L, Högberg L, Danielsson L, Ascher H, Dannaeus A, Hernell O, Ivarsson A,
Lindquist B, Nivenius K. How do Swedish paediatric clinics diagnose coeliac disease?
Results of a nationwide questionnaire study. Acta Paediatr 2006; 95:1495-7.
* Olsson C, Hernell O, Hörnell A, Lönnberg G, Ivarsson A. Difference in celiac disease risk
between Swedish birth cohorts suggests an opportunity for primary prevention. Pediatrics
2008;122:528-34.
Olsson C, Hörnell A, Ivarsson A, Mattsson Sydner Y. The everyday life of adolescent celiacs
– issues of importance for compliance with the gluten-free diet. J Hum Nutr Diet
2008;21:359-367.
Lagerqvist C, Dahlbom I, Hansson T, Juto P, Olcén O, Hernell O, Ivarsson A. Anti-gliadin Ig
A best in finding the youngest celiacs. J Pediatr Gastroenterol Nutr 2008;47:428-35.
* Myléus A, Ivarsson A, Webb L, Danielsson L, Hernell O, Högberg L, Karlsson E,
Lagerqvist C, Norström F, Rosén A, Sandström O, Stenhammar L, Stenlund H, Wall S,
Carlsson A. Celiac disease revealed in 3% of Swedish 12-year-olds born during an epidemic.
J Pediatr Gastroenterol Nutr 2009;49:170-6.
Olsson C, Stenlund H, Hörnell A, Hernell O, Ivarsson A. Regional variation in celiac disease
risk within Sweden revealed by the nationwide prospective incidence register. Acta Paediatr
2009;98:337-42.
Olsson C, Lyon P, Hörnell A, Ivarsson A, Sydner YM. Food that makes you different: the
stigma experienced by adolescents with celiac disease. Qual Health Res 2009;19:976-84.
* Nordyke K, Myléus A, Ivarsson A, Carlsson A, Danielsson L, Högberg L, Karlsson E,
Emmelin M. How do children experience participating in a celiac disease screening? A
qualitative study based on children’s written narratives. Scand J Public Health 2010;38:3518.
1 (4)
Norström F, Ivarsson A, Lindholm L, Carlsson A, Danielsson L, Högberg L, Karlsson E,
Löfgren C. Parents’ Willingness to Pay for Coeliac Disease Screening of Their Child. J
Pediatr Gastroenterol Nutr 2011;52: 452–459.
Högberg L, Webb C, Fälth-Magnusson K, Forslund T, Magnusson K-E, Danielsson L,
Ivarsson A, Karlsson E, Sandström O, Sundqvist T. Children with screening-detected celiac
disease show increased levels of nitric oxide products in urine. Acta Paediatr. 2011 Feb 1.
doi: 10.1111/j.1651-2227.2011.02186.x. [Epub ahead of print]
Edvardsson K, Garvare R, Ivarsson A, Eurenius E, Mogren I, Nyström ME. Sustainable
practice change: Professionals' experiences with a multisectoral child health promotion
programme in Sweden. BMC Health Services Research 2011, 11:61, doi:10.1186/1472-696311-61. [Epub ahead of print]
Webb C, Halvarsson B, Norström F, Myléus A, Carlsson A, Danielsson L, Högberg L,
Ivarsson A, Karlsson E, Stenhammar L, Sandström O. Accuracy in celiac disease diagnostics
by controlling the small-bowel biopsy process. J Pediatr Gastroenterol Nutr [In press].
Eurenius E, Lindkvist M, Sundqvist M, Ivarsson A, Mogren I. Maternal and paternal selfrated health and BMI in relation to lifestyle in early pregnancy – the Salut Programme in
Sweden. Scand J Public Health [Accepted].
Prawirohartono EP, Nyström L, Ivarsson A, Stenlund S, Lind T. The impact of prenatal
vitamin A and zinc supplementation on growth of children up to two years of age in rural
Java, Indonesia. Public Health Nutrition [Accepted].
2. Peer-reviewed articles in conference proceedings
Ivarsson A. Celiac disease – is there a dietary prevention? In: Stern M, ed. Proceedings of the
18th meeting of the Working group on Prolamin Analysis and Toxicity, Stockholm 2-5 October
2003. Zwickaue: Verlag Wissenschaftliche Scripten, 2004. pp.165-171.
Hernell O, Forsberg G, Hammarström ML, Hammarström S; Ivarsson A. Celiac disease:
Effect of weaning on disease risk. Nestlé Nutrition Workshops, 2005. pp.27-42.
Nordyke K, Olsson C, Hernell O, Ivarsson A. Epidemiological research drives a paradigm
shift in complementary feeding - the celiac disease story and lessons learnt. In: Koletzko B,
Koletzko S, Rümmele F, eds. Drivers of Innovation in Pediatric Nutrition. Nestlé Nutr Inst
Workshop Ser Pediatr Program. Nestec Ltd, Vevey/S. Karger AG, Basel. 2010; 66: 65-79.
3. Review articles, chapters, etc.
Ivarsson A, Persson LÅ, Hernell O. Primary prevention of coeliac disease by favourable
infant feeding practices. In Catassi C, Fasano A, Corazza GR, eds. Primary prevention of
celiac disease – the utopia of the next millennium? Pisa: AIC Press, 2003. pp 43-60.
Ivarsson A, Hernell O. On the Multifactorial Aetiology of Coeliac Disease. In: Coeliac
disease in childhood. Annales Nestlé 2004; 62:107-118.
2 (4)
Mearin LM, Ivarsson A, Dickey W. Celiac disease: Is it time for mass screening? In: Mulder
C, Cellier C. Coeliac disease. Best practice & research - Clinical Gastroenterology, 2005.
pp.441-452.
Ivarsson A. The Swedish epidemic of coeliac disease explored using an epidemiological
approach – some lessons to be learnt. In: Mulder C, Cellier C. Coeliac disease. Best practice
& research - Clinical Gastroenterology, 2005. pp. 425-440.
* Ivarsson A, Myleus A, Wall S. Towards preventing celiac disease - an epidemiological
approach. In: Fasano A, Troncone R, Branski D, eds. Pediatric and Adolescent Medicine.
New Frontiers in Celiac Disease. Karger Publishers, Basel, Switzerland, 2008. pp. 198-209.
* Troncone R, Ivarsson A, Szajewska H, Mearin LM, also on behalf of the members of the
European multi-stakeholder platform on CD (CDEUSSA). Future research on celiac disease.
A position report from the European multi-stakeholder platform on Celiac Disease
(CDEUSSA). Aliment Pharmacol Ther 2008;27:1030-43.
Ivarsson A, Högberg L, Stenhammar L, for the Swedish Childhood Coeliac Disease Working
Group. The Swedish Childhood Coeliac Disease Working Group after 20 years: history and
future. Acta Pædiatr 2010;99:1429–1431.
Hogen Esch CE, Rosén A, Auricchio R, Romanos J, Chmielewska A, Putter H, Ivarsson A,
Szajewska H, Koning F, Wijmenga C, Troncone R, Mearin ML. The PreventCD Study
design: towards new strategies for the prevention of coeliac disease. Eur J Gastroenterol
Hepatol. 2010c;22:1424-1430.
4. Patents
5. Computer program development
6. Other publications
Ludvigsson JF, Ivarsson A. Celiac Disease. Decision tool need be developed for children.
BMJ 2007,334;864. [Letter].
Ivarsson A. Celiaki – från en ovanlig barnsjukdom till ett folkhälsoproblem. Barnläkaren.
2008; 2: 8-9
Myléus A, Ivarsson A. Celiaki - en vanlig sjukdom som ofta förbises. Barnbladet
2009;05:24-26
Nordyke K, Ivarsson A. Infant Feeding and Celiac Disease. In Dennis M & Leffler D, Real
Life with Celiac Disease: Troubleshooting and Thriving Gluten Free. Bethesda Real: AGA
Press, 2010, pp.203-6.
3 (4)
Petersen S, Bergström E, Cederblad M, Ivarsson A, Köhler L, Rydell A-M, Stenbeck M,
Sundelin C, Hägglöf B. Barns och ungdomars psykiska hälsa i Sverige. En systematisk
litteraturöversikt med tonvikt på förändringar over tid. Rapport från Hälsoutskottet vid
Kungliga Vetenskapsakademin april 2010.
Ivarsson A, Nilsson K, Lindgren U, de Luna X, Bergdahl I. SIMSAM nätverket i Umeå:
Registerdata om barndomen – kunskapsbas för hållbar hälsa och välfärd. Medlemstidning för
Svensk Epidemiologisk Förening (SVEP). Årgång 28, Nr 2010-3
4 (4)
Annex C
1
List of publications for Bengt Persson 2002–2010
Citations according to Web of Science
h-index 37
6109 citations
*
5 most important publications for this project
Original articles in refereed journals
103.
Kallberg, Y., Oppermann, U., Jörnvall, H. & Persson, B. (2002) Short-chain
dehydrogenase/reductase (SDR) relationships: A large family with eight clusters
common to human, animal, and plant genomes. Protein Sci. 11, 636–641.
Number of citations: 95
104.
Nordling, E., Jörnvall, H. & Persson,
B. (2002) Medium-chain
dehydrogenases/reductases (MDR): Family characterizations including genome
comparisons and active site modelling. Eur. J. Biochem. 269, 4267–4276.
105.
Nordling, E., Persson, B. & Jörnvall, H. (2002) Differential multiplicity of MDR
alcohol dehydrogenases: enzyme genes in the human genome versus those in
organisms initially studied. Cell. Mol. Life Sci. 59, 1070–1075.
106.
Kallberg, Y., Oppermann, U., Jörnvall, H. & Persson, B. (2002) Short-chain
dehydrogenases/reductases (SDRs): Coenzyme-based functional assignments in
completed genomes. Eur. J. Biochem. 269, 4409–4417.
107.
Nilsson, J., Persson, B. & von Heijne, G. (2002) Prediction of partial membrane
topologies using a consensus approach. Prot. Sci. 11, 2974–2980.
108.
Oppermann, U., Filling, C., Hult, M., Shafqat, N., Wu, X., Lindh, M., Shafqat, J.,
Nordling, E., Kallberg, Y., Persson, B. & Jörnvall, H. (2002) Short-chain
dehydrogenases/reductases (SDR): the 2002 update. Chem. Biol. Interact 143, 247-253.
109.
Jörnvall, H. Nordling, E. & Persson, B. (2002) Multiplicity of eukaryotic ADH and
other MDR forms. Chem. Biol. Interact 143, 255–261.
110.
Persson, B., Kallberg, Y., Oppermann, U. & Jörnvall, H. (2002) Coenzyme-based
functional assignments of short-chain dehydrogenases/reductases (SDRs). Chem. Biol.
Interact 143, 271–278.
Annex C
2
111.
Dreij, K., Sundberg, K., Johansson, A.-S., Nordling, E., Seidel, A., Persson, B.,
Mannervik, B. & Jernström, B. (2002) Catalytic Activities of Human Alpha Class
Glutathione Transferases toward Carcinogenic Dibenzo[a,l]pyrene Diol Epoxides.
Chem. Res. Toxicol. 15, 825–831.
113.
Hosia, W., Bark, N., Liepinsh, E., Tjernberg, A., Persson, B., Hallén, D., Thyberg, J.,
Johansson, J. & Tjernberg, L. (2004) Folding into a -hairpin prevents amyloid fibril
formation. Biochemistry 43, 4655–4661.
114.
Almstedt, K., Lundqvist, M., Carlsson, J., Karlsson, M., Persson, B., Jonsson, B.-H.,
Carlsson, U. & Hammarström, P. (2004) Unfolding a Folding Disease – Folding,
Misfolding and Aggregation of the Marble Brain Syndrome Associated Mutant H107Y
of Human Carbonic Anhydrase II. J. Mol. Biol. 342, 619–633.
115.
Bresell, A., Weinander, R., Lundqvist, G., Raza, H., Shimoji, M., Sun, T.-H., Balk, L.,
Wiklund, R., Eriksson, J., Jansson, C., Persson, B., Jakobsson, P-J., & Morgenstern,
R. (2005) Bioinformatic and enzymatic characterization of MAPEG members. FEBS J.
272, 1688–1703.
116.
Nilsson, J., Persson, B. & von Heijne, G. (2005) Comparative analysis of amino acid
distributions in integral membrane proteins from 107 genomes. Proteins 60, 606–616.
117.
Okamoto, H., Hammarberg, T., Zhang, Y.-Y., Persson, B., Watanabe, T., Samuelsson,
B. & Rådmark, O. (2005) Mutation analysis of the human 5-lipoxygenase C-terminus:
Support for a stabilizing C-terminal loop. Biochem. Biophys. Acta 1749, 123–131.
118.
Lavebratt, C., Sengul, S., Gu, H., Persson, B., Nordfors, L., Östenson, C.-G., Efendic,
S., Arner, P. Hoffstedt, J., & Schalling, M. (2005) Association study between
chromosome 10q26.11 and obesity among Swedish men. Int. J. Obes. 29, 1422–1428.
119.
Henriksson, M., Nordling, E. Melles, E., Shafqat, J., Ståhlberg, M., Ekberg, K.,
Persson, B., Bergman, T., Wahren, J, Johansson, J. & Jörnvall, H. (2005) Separate
functional features of proinsulin C-peptide. Cell. Mol. Life Sci. 62, 1772–1778.
121.
Lavebratt, C., Alpman, A., Hoffstedt, J., Persson, B., Arner, P. & Schalling, M. (2006)
Common neuropeptide Y2 receptor gene variant is protective against obesity among
Swedish men. Int. J. Obes. 30, 453–459.
Annex C
3
122.
Hederos, S., Tegler, L., Carlsson, J., Persson, B., Viljaanen, J. & Broo, K. S. (2006) A
promiscuous glutathione transferase transformed into a selective thiolester hydrolase.
Org. Biomol. Chem. 4, 90–97.
123.
Kallberg, Y. & Persson, B. (2006) Prediction of coenzyme specificity in
dehydrogenases/reductases. A hidden Markov model-based method and its application
on complete genomes. FEBS J. 273, 1177–1184.
*
124.
Robins, T., Carlsson, J., Sunnerhagen, M., Wedell, A. & Persson, B. (2006) Structural
model of human CYP21 based on mammalian CYP2C5 shows structural features to
correlate with clinical severity of mutations causing congenital adrenal hyperplasia.
Mol. Endocrin. 20, 2946–2964.
125.
Bresell, A., Servenius, B. & Persson, B. (2006) OAT – A tool to better understand
listings of genes. Appl. Bioinformatics. 5, 225–236.
Number of citations:
126.
Hedlund, J., Cantoni, R., Baltscheffsky, M., Baltscheffsky, H. & Persson, B. (2006)
Analysis of ancient sequence motifs in the family of membrane-bound proton-pumping
inorganic pyrophosphatases (H+-PPases). FEBS J. 273, 5183–5193.
127.
Hellgren, M., Strömberg, P., Gallego, O., Persson, B., Parés, X. & Höög, J.-O. (2007)
Alcohol dehydrogenase 2 is the main hepatic enzyme for retinol metabolism in man.
Cell. Mol. Life Sci. 64, 498–505.
128.
Jansson, A., Carlsson, J., Olsson, A., Storm, P., Margolin, S., Gunnarsson, C.,
Stenmark-Askmalm, M., Lindblom, A., Persson, B. & Stål, O. (2007) A new
polymorphism in the coding region of exon four in HSD17B2 in relation to risk of
sporadic and hereditary breast cancer. Breast Cancer Res Treat. 106, 57–64.
*
129.
Sjöstrand, D., Carlsson, J., Paratcha, G., Persson, B. & Ibanez, C. F. (2007) Disruption
of the GDNF binding site in NCAM dissociates ligand binding and homophilic cell
adhesion. J. Biol. Chem. 282, 12734–12740.
130.
Bresell, A. & Persson, B. (2007) Characterization of oligopeptide patterns in large
protein sets. BMC Genomics 8, 346.
131.
Wahlström, J., Dengjel, J., Persson, B., Duyar, H., Rammensee, H.-G., Stevanović, S.,
Eklund, A., Weissert, R. & Grunewald, J. (2007) Identification of HLA-DR-bound
peptides presented by human bronchoalveolar lavage cells in sarcoidiosis. J. Clin.
Invest. 117, 3576–3582.
Annex C
*
4
132.
Nordling, E., Kallberg, Y., Johansson, J. and Persson, B. (2008) Molecular dynamics
studies of alpha-helix stability in fibril-forming peptides. J. Comput. Aided Mol. Des.
22, 53–58.
133.
Hennig, J., Bresell, A., Sandberg, M., Hennig, K. D. M., André, I., Linse, S., WahrenHerlenius, M., Persson, B. & Sunnerhagen, M. (2008) The Fellowship of the RING:
The RING-B-Box Linker Region Interacts with the RING in TRIM21/Ro52, Contains
a Native Autoantigenic Epitope in Sjögren Syndrome, and is an Integral and
Conserved Region in TRIM Proteins. J. Mol. Biol. 377, 431–449.
134.
Eriksson, H., Lengqvist, J., Hedlund, J., Orre, L., Persson, B., Lehtiö, J. & Jakobsson,
P.-J. (2008) Quantitative membrane proteomics applying narrow range peptide
isoelectric focusing for studies of resistance mechanisms in a small cell lung cancer
cell line. Proteomics 8, 3008–3018.
135.
Sompallae, R., Gastadello, S., Hildebrand, S., Zinin, N., Hassink, G., Lindsten, K.,
Haas, J., Persson, B. & Masucci, M. G. (2008) Epstein-Barr virus encodes three bona
fide ubiquitin-specific proteases. J. Virol. 82, 10477–10486.
136.
Almgren, M., Nyengaard, J.R., Persson, B. & Lavebratt, C. (2008) Carbamazepine
protects against neuronal hyperplasia and abnormal gene expression in the
megencephaly mouse. Neurobiol. Dis. 32, 364–376.
139.
Persson, B., Kallberg, Y., Bray, J.E., Bruford, E., Dellaporta, S.L., Favia, A.D.,
Duarte, R.G., Jörnvall, H., Kavanagh, K.L., Kedishvili, N., Kisiela, M., Maser, E.,
Mindnich, R., Orchard, S., Penning, T.M., Thornton, J.M., Adamski, J. and
Oppermann, U. (2008) The SDR (short-chain dehydrogenase/reductase and related
enzymes) nomenclature initiative. Chem. Biol. Interact. 178, 94–98.
140.
Carlsson, B., Lindberg, A.M., Rodrigues-Díaz, J., Hedlund, K.-O., Persson, B. &
Svensson, L. (2009) Quasispecies dynamics and molecular evolution of human
novovirus capsid P region during chronic infection. J. Gen. Virol. 90, 432–441.
*
141.
Carlsson, J., Soussi, T. & Persson, B. (2009) Investigation and prediction of the
severity of p53 mutants using parameters from structural calcuations. FEBS J. 276,
142–155.
142.
Hedlund, J., Johansson, J. & Persson, B. (2009) BRICHOS – A superfamily of
multidomain proteins with diverse functions. BMC Res. Notes 2, 180.
Annex C
5
143.
Wahlström, J., Dengjel, J., Winqvist, O., Targoff, I., Persson, B., Duyar, H.,
Rammensee, H.-G., Eklund, A., Weissert, R. & Grunewald, J. (2009) Autoimmune T
cell responses to antigenic peptides presented by bronchoalveolar lavage cell HLA-DR
molecules in sarcoidosis. Clin. Immunol. 133, 353–363.
144.
Hellgren, M., Carlsson, J., Östberg, L., Staab, C. A., Persson, B. & Höög, J.-O. (2010)
Enrichment of ligands with molecular dockings and subsequent characterization for
human alcohol dehydrogenase 3. Cell. Mol. Life Sci. 67, 3005–3015.
145.
Ruiz-Pavón, L., Karlsson, P. M., Carlsson, J., Samyn, D., Persson, B., Persson, B. L.
& Spetea, C. (2010) Functionally important amino acids in the Arabidopsis thylakoid
phosphate transporter: homology modeling and site-directed mutagenesis.
Biochemistry 49, 6430–6439.
147.
Kallberg, Y., Oppermann, U. and Persson, B. (2010) Classification of the short-chain
dehydrogenase/reductase (SDR) super-family using hidden Markov models. FEBS
Journal 277, 2375–2386.
148.
Abraham-Nordling, M., Persson, B. & Nordling, E. (2010) Model of parathyroid
hormone-2 receptor and tuberoinfundibular peptide of 39 residues. BMC Res. Notes.3,
270.
149.
Hedlund, J., Jörnvall, H. & Persson, B. (2010) Subdivision of the MDR superfamily of
medium-chain dehydrogenases/reductases through iterative hidden Markov model
refinement. BMC Bioinformatics 11, 534.
150.
Sullivan, P. F., Allander T, Lysholm, F., Goh, S., Persson, B., Jacks, A., Evengård, B.,
Pedersen, N. L. & Andersson, B. (2011) An unbiased metagenomic search for
infectious agents using monozygotic twins discordant for chronic fatigue. BMC
Microbiol. 11, 2.
151.
Melkersson, K., Persson, B. & Hongslo, T. (2011) The insulin receptor substrate-4
(IRS-4) gene and schizophrenia: no evidence for a main genetic factor, however one
report of a single schizophrenia patient with a mutation. Neuro Endocrinol Lett. 32,
52--58.
152.
Joannin, N., Kallberg, Y., Wahlgren, M. & Persson B. (2011) RSpred, a set of Hidden
Markov Models to detect and classify the RIFIN and STEVOR proteins of
Plasmodium falciparum. BMC Genomics. 12, 119.
154.
Cederlund, E., Hedlund, J., Hjelmqvist, L., Jonsson, A., Shafqat, J., Norin, A., Keung,
W.-M., Persson, B. & Jörnvall, H. (2011) Characterization of new medium-chain
alcohol dehydrogenases adds resolution to duplications of the class I/III and the subclass I genes. Chem. Biol. Interact., in press.
155.
Lysholm, F., Andersson, B. & Persson, B. (2011) FAAST: Flow spce Assisted
Alignment Search Tool. BMC Bioinformatics, submitted.
Annex C
*
6
156.
Lysholm, F., Wetterbom, A., Lindau, C., Darban, H., Bjerkner, A., Fahlander, K.,
Lindberg, A. M., Persson, B., Allander, T. & Andersson, B. (2011) Characterization
of the viral microbiome in patients with severe lower respiratory tract infections, using
metagenomic sequencing. Manuscript.
157.
Carlsson, J., Shariatpanahi, A. V., Schultz, S. W. Westermark, G. T. & Persson, B.
(2011) A folding study on IAPP (Islet Amyloid Polypeptide) using molecular
dynamics simulations. Manuscript.
158.
Carlsson, J., Wedell, A. & Persson, B. (2011) A structural model of human steroid 11beta-hydroxylase, CYP11B1, used to predict consequences of mutations. Manuscript.
Editorships, review articles, text books and book chapters
112.
Hammarberg, T., Reddy, K. V., Persson, B. & Rådmark, O. (2002) Calcium binding to
5-lipoxygenase. Adv. Exp. Med. Biol. 507, 117–121.
120.
Persson, B. (2006) Bioinformatics in analysis of membrane proteins. “Structural
Genomics on Membrane Proteins” (K. Lundstrom, ed.). CRC Press, FL, USA.
137.
Persson, B., Hedlund, J. & Jörnvall, H. (2008) The super-family of MDR (mediumchain dehydrogenases/reductases), Cell. Mol. Life Sci. 65, 3879–3894.
138.
Kavanagh, K. L., Jörnvall, H., Persson, B. & Oppermann, U. (2008) Functional and
structural diversity within the short-chain dehydrogenase/reductase (SDR) superfamily. Cell. Mol. Life Sci. 65, 3895–3906.
146.
Jörnvall, H., Hedlund, J., Bergman, T., Oppermann, U. & Persson, B. (2010)
Superfamilies SDR and MDR: from early ancestry to present forms. Emergence of
three lines, a Zn-metalloenzyme, and distinct variabilities. Biochem. Biophys. Res.
Commun. 396, 125–130.
153.
Carlsson, J. & Persson, B. (2011) Investigating protein variants using structural
calculations techniques. In Homology Modeling: Methods and Protocols (Orry, A. J.
W. & Abagyan, R., Eds), Humana Press, USA, in press.
Annex C
7
Computer programs




TMAP for prediction of membrane-spanning regions in proteins
Coenzyme prediction service
KIND non-redundant protein sequence database
Predictions and visualisation of molecular properties due to mutations in CYP11B1,
CYP21, and p53.
Programs and services are linked from http://www.ifm.liu.se/bioinfo/
Five most cited papers
50.
Jörnvall, H., Persson, B., Krook, M., Atrian, S., González-Duarte, R., Jeffery, J. &
Ghosh, D. (1995) Short-chain dehydrogenases/reductases (SDR). Biochemistry 34,
6003–6013.
34.
Persson, B., Krook, M. & Jörnvall, H. (1991) Characteristics of short-chain alcohol
dehydrogenases and related enzymes. Eur. J. Biochem. 200, 537–543.
46.
Persson, B. & Argos, P. (1994) Prediction of transmembrane segments in proteins
utilising multiple sequence alignments. J. Mol. Biol. 237, 182–192.
85.
Leers, M. P. G., Kölgren, W., Björklund, V., Bergman, T., Tribbick, G., Persson, B.,
Björklund, P., Ramaekers, F. C. S., Björklund, B., Nap, M., Jörnvall, H. & Schutte, B.
(1999) Immunocytochemical detection and mapping of a cytokeratin 18 neo-epitope
exposed during early apoptosis. J. Pathol. 187, 567–572.
4.
Flinta, C., Persson, B., Jörnvall, H. & von Heijne, G. (1986) Sequence determinants of
cytosolic N-terminal protein processing. Eur. J. Biochem. 154, 193–196.
List of Publications 1
Cecilia Magnusson Sjöberg
1. **Den svåra avvägningen: kan rättssäkerhetsgarantier kompensera för ett försvagat
integritetsskydd? In: Overvåking i en rettsstat. Published in the series Nordisk årsbok i
rättsinformatik (NÅR). Ed. Dag Wiese Schartum. Oslo: Fagbogforlaget, 2010.
2. ** Fyra vågor i debatten om data och integritet. Article published on Netopia, 2010,
http://www.netopia.se/2010/06/24/torsdagskronikan-fyra-vagor-i-debatten-om-data-ochintegritet/
3. * Tjänstemannen i e-förvaltningen. In Festskrift till Peter Blume. Ret Informatik og Samfund,
Copenhagen: Jurist- og Økonomforbundets Forlag, 2010, pp. 291-305.
4. E-Stockholm ´08 Agenda. In: Nordisk årsbok i rättsinformatitik (NÅR) 2006-2008. Ed. Stanley
Greenstein. Stockholm: Jure. 2010, pp. 15-26.
5. * Summing up the SLIM Project: Secure Legal Information Management. Published in the
SLIM Paper series. Stockholm: The Swedish Law & Informatics Research Institute (IRI),
Faculty of Law, Stockholm University, 2010.
6. Yttrandefrihet och meddelarfrihet i e-förvaltningen. In: Fri åsiktsbildning: om yttrandefrihet och
meddelarfrihet i statsförvaltningen. KRUS, Kompetensrådet för utveckling i staten, 2009, pp.
12-19.
7. Elektronisk rättsinformation: en angelägenhet för rättsväsendet. In: Regeringsrätten 100 år, pp.
301-309. Uppsala: Iustus förlag. 2009.
8. SMS-meddelanden och handlingsoffentlighet. In: JT (Juridisk Tidskrift) 2009-10, pp. 66-169.
Authored together with Per Furberg.
9. *Studiematerial i Rättsinformatik: e-förvaltning, e-handel och e-samhället. Stockholm: US-AB,
2009 (2nd edition). 287 pp. Authored together with Daniel Westman.
10. **Den digitala bilden som personuppgift. In: Festskrift till Marianne Levin. Red. Ulf Bernitz et.al.
ln: Stockholms: Norstedts Juridik 2008, pp. 381-399.
11. Juridikens proaktiva roll i informationssamhället. Guest Column in PointLex Legala affärer. nr.
3, 2008 p. 8.
12. Proactive Law in the Nordic Countries. In: A Proactive Approach to Contracting and Law pp.
43-56. Ed. Helena Haapio. Turku University of Applied Sciences. Course Material 38. Turku
2008.
13. **Constitutional Rights and New Technologies in Sweden. In: Constitutional Rights and New
Technologies: A Comparative Study, pp. 199-224. Eds: Ronald Leenes, Bert-Jaap Koops and
Paul de Hert. Information Technology & Law Series 15, The Hague: TMC Asser Press, 2007.
14. Legal Information Supply and the Digital Divide. In: Scandinavian Studies in Law, Volume 50,
What is Scandinavian Law? Social Private Law, pp. 393-408. Stockholm: Institute for
Scandinavian Law, 2007.
15. Datorisering av rättsinformation: Särskilt inom den offentliga förvaltningen. Bidrag i Juridiska
fakulteten i Stockholm 100 år. En minnesskrift. 2007, pp. 286- 313. Ed. Claes Petersson.
16. Rätt rättsinformation i e-förvaltningen. In: Nordisk årsbok i Rättsinformatik (NÅR), Elektronisk
forvaltning i Norden: Praksis, Lovgivning og Rettslige Utfordringer, pp. 149-166. Ed. Dag
Wiese Schartum Oslo: Fagbogforlaget, 2006.
17. Law and Informatics in a Laboratory Research Environment. In: Festskrift till Peter Seipel, pp.
397-411. Eds. Cecilia Magnusson Sjöberg and Peter Wahlgren. Stockholm: Norstedts Juridik
AB, 2006.
18. Festskrift till Peter Seipel. Eds. Cecilia Magnusson Sjöberg and Peter Wahlgren. Stockholm:
Norstedts Juridik AB, 2006.
1
Med tanke på att den föreskrivna kategoriseringen i ”Referee-bedömda artiklar, Referee-bedömda
konferensbidrag (vars resultat inte finns i andra publikationer) och Översiktsartiklar, bokkapitel,
böcker” svårligen låter sig överföras till rättsvetenskaplig forskningsinformation har jag i förevarande
ansökan låtit lista publikationer sekventiellt med information om referensernas karaktär av artikel,
bokkapitel, etc.
19. Presentation of the Nordic School of Proactive Law. In: Scandinavian Studies in Law, Volume
49, A Proactive Approach, pp. 13-19. Stockholm: Institute for Scandinavian Law, 2006.
20. Introduction to law in a digital environment. In: IT Law for IT Professionals – an introduction.
Ed. Cecilia Magnusson Sjöberg, pp. 9-24. Stockholm: Studentlitteratur, 2005.
21. E-government. In: IT Law for IT Professionals - an introduction. Ed. Cecilia Magnusson
Sjöberg, pp. 63-81. Stockholm: Studentlitteratur, 2005.
22. * Legal Management of Information Systems: incorporating law in e-solutions. Ed: Cecilia
Magnusson Sjöberg. Stockholm: Studentlitteratur, 2005.
23. IT Law for IT Professionals - an introduction. Ed: Cecilia Magnusson Sjöberg. Stockholm:
Studentlitteratur, 2005.
24. Juridiska utmaningar på elmarknaden: IT-styrd tillsyn. In: JT (Juridisk Tidskrift) 2004-05, pp.
334-351.
25. Nya lydelsen av 5 § förvaltningslagen – inte bara en kodifiering av praxis. In: Vem styr den
elektroniska förvaltningen? Riksrevisionens rapport RIR 2004:19, Appendix. pp. 103-128.
Also published in: Förvaltningsrättslig tidskrift (FT) 3, 2004, pp. 285-305
26. Managing Electronic Signatures: Current challenges. Cecilia Magnusson Sjöberg & Anna
Nordén. In: Scandinavian Studies in Law Volume 47, IT Law, pp. 79-95. Stockholm: Institute
for Scandinavian Law, 2004.
27. **Bodil-målet om PuL:s tillämpning på webben fortsätter. Digital article published in Pointlex
January 20th 2004 (http://www.pointlex.com/).
28. Managing Electronic Signatures. In: EU Electronic Commerce Law. Eds. Ruth Nielsen, Søren
Sandfeld Jacobsen and Jan Trzaskowski, pp. 95-98. Copenhagen: DJØF Publishing, 2004.
29. Juridisk vägledning för IT-användningen vid SU (Stockholms universitet), updated 2007. 17 pp.
30. LISA – ett nytt flitigt nätverk. In: Lov & Data nr. 75, 2003, pp. 25-26.
31. Rättsinformation, metadata och standarder för informationshantering. In: Perspektiv på
rättsinformation: Rättinformation och IT 2002. 2002 års rättsinformationskonferens i
samarbete med Stiftelsen för Rättsinformation pp.26-35. IT-kommissionens rapport 2/3003.
SOU 2003:58.
32. * Tillit i informationssamhället: Kejsarens nya kläder eller förändrade förutsättningar för
rättsutvecklingen. In: Nordisk årsbok i Rättsinformatik (NÅR) 2002. Anonymitet Övervakning
Tillit pp. 107-125. Ed. Peter Blume. Stockholm: Jure AB, 2003. Also published in Allmän
rättslära studiematerial 2005/26 pp.166-182.
33. Making Money from Information Standards. In: XML Europe 2003, 5-8 May, 2003, London,
Conference Proceedings. 22 pp. (electronically published on a CD). Nicklas Lundblad and
Cecilia Magnusson Sjöberg.
34. The Melting Pot Paradox of Structured Documents: New Tools for Digital Legislation. In:
Digitale wetgeving, Digital Legislation. Ma.-F Moens Ed.. Brugge: die keure, 2002, pp.133-147.
35. The Melting Pot Paradox of Structured Documents. In: Law and Information Technology,
Swedish Views: An anthology produced by the IT Law Observatory of the Swedish ICT
Commission. SOU 2002:112, pp. 195-206.
36. XML as a tool for legal validity in e-business. Proceedings of the eLEGAL 2002 European
Conference on Legal Aspects of ICT Application in Project-Based Business, October 2002,
Loughborough University, UK. 20 pp.
37. XML as a tool for legal validity in a security context. In: XML Europe 2002, 19-24 May, 2002,
Barcelona, Conference Proceedings. 10 pp. (electronically published on a CD).
1. Referee-bedömda artiklar
*(7) Härkönen, J. and Bihagen, E. 2011. ’Occupational attainment and career progression in
Sweden’. Forthcoming in European Societies (issue 3).
*(6) Bihagen, E. 2008. ‘Does Class Matter Equally for Men and Women? A Study of the
Impact of Class on Wage Growth in Sweden 1999-2003’. Sociology, 42(3): 522-540.
*(5) Bihagen, E. 2007. ‘Class origin effects on downward career mobility in Sweden 19822001’. Acta Sociologica, 50(4): 415-430.
*(4) Bihagen, E. and Ohls, M. 2007. ‘Are women over-represented in dead-end jobs? A
Swedish study using empirically derived measures of dead-end jobs’. Social Indicators
Research, 84(2): 159-177.
(3) Bihagen, E. 2007. ’Nya möjligheter för stratifieringsforskning i Sverige: Internationella
yrkesklassificeringar och stratifieringsmått över tid’. Sociologisk forskning, 44(1): 5267.
*(2) Bihagen, E. and Ohls, M. 2006. ‘The Glass-Ceiling – Where is it? Women’s and men’s
career prospects in the private vs. the public sector in Sweden 1979-2000’. The
Sociological review, 54(1): 20-47.
(1) Bihagen, E. 2005. ‘Labour Market Rewards and the Neo-Classical Soup: An Analysis of
the Relation between Social Class and Economic Inequalities in the Last Quarter of the
20th Century’, Acta Sociologica 48(1): 63-84.
3. Översiktsartiklar,bokkapitel, böcker
(8) Bihagen, E. and Nermo, M. 2011. ’Social stratifiering och social klass’ Manuscript for
forthcoming book: Liber, eds. M. Rostila & S. Toivonen. “Den ojämlika hälsan”.
(7) Mood, C., Jonsson, J. O. and Bihagen, E. 2011. ‘Socioeconomic persistence across
generations: The role of cognitive and non-cognitive processes.’ Manuscript for chapter
in forthcoming book: J. Ermisch, M. Jäntti, and T. Smeeding (eds.), Cross-National
Research on the Intergenerational Transmission of Advantage. New York: Russell Sage.
(6) Bihagen, E., and Nermo, M. 2010. ”The Effectiveness of ESeC and EGP in Clustering
Occupations: A study of occupational wage growth in Sweden”, pp 181-190 in Rose, D.
and Harrison, E. (eds.) 2010. Social Class in Europe: An introduction to the European
Socio-economic Classification. Abingdon(Oxon): Routledge
(5) Bihagen, E., Nermo, M., Erikson R. 2010. ”Social Class and Employment Relations:
Comparisons between the ESeC and EGP class schemas using European data”, pp 89113 in Rose, D. and Harrison, E. (eds.) 2010. Social Class in Europe: An introduction to
the European Socio-economic Classification. Abingdon(Oxon): Routledge
(4) Jonsson, J. O., Mood, C., Bihagen, E. 2010. ‘Fattigdomens förändring, utbredning och
dynamik’. Pp 90-126 in Socialstyrelsen. Social rapport 2010.
(3) Bihagen, E. 2009. ’Rosemary Crompton: Class and Stratification’ (book review). Acta
Sociologica, 52(2): 176-191. http://dx.doi.org/10.1177/0001699309104004
(2) Turner, K. J. , Lambert, P. S. , Tan, K. L. L. , Gayle, V. , Sinnott, R. O. , Prandy, K. ,
Bihagen, E. , van Leeuwen, M. 2008. ‘Grid Computing for Social Science’. Pp 643-651
in Putnik, G. D and Cunha, M. M.(eds.) Encyclopedia of Networked and Virtual
Organizations, p 643-651. Hershey: IGI Global.
(1) Bihagen, E. and Hansen, L. H. 2004. ’Svensk yrkesstruktur och yrkesklassificering över
tid’. Pp 45-68 in Blomsterberg, Marianne, and Soidre, Tiiu (eds.). Reflektioner:
Perspektiv i forskning om arbetsliv och arbetsmarknad. No 132. Göteborg University:
Department of Sociology
Populärvetenskapliga artiklar/presentationer
(2) November 10, 2010. ”Fattigdomens förändring, utbredning och dynamik”. Presentation at
Statistics Sweden’s (SCB) ”Välfärdsdagen 2010 med tema fattigdom” in Stockholm.
(1) March 25, 2004. ”Är Sverige ett klassamhälle?”. Presentation at Faktoriet’s exhibition Det
handlar om klass in Eskilstuna.
*
1.
**
2.
Nietfeld JJ, Sugarman J, Litton JE. The Bio-PIN: a concept to improve
biobanking. Nat Rev Cancer. 2011 Apr;11(4):303-8. Epub 2011 Mar 17.
PubMed PMID: 21412253.
Litton J-E. Biobank informatics: connecting genotypes and phenotypes. In:
Dillner J, editor. Methods in biobanking. New York: Humana Press; 2011. p.
343-61.
**
3.
Wichmann H-E, Kuhn KA, Waldenberger M, Schmelcher D, Schuffenhauer S,
Meitinger T, Wurst SHR, Lamla G, Fortier I, Burton PR, Peltonen L, Metspalu
A, Riegman P, Landegren U, Taussig MJ, Litton J-E, Fransson M, Eder J,
Cambon-Thomsen A, Bovenberg J, Dagher G, van Ommen G-J, Griffith M,
Yuille M, Zatloukal K. Comprehensive catalogue of European biobanks. Nature
Biology. 2011 in press.
4.
Bexelius C, Sandin S, Trolle-Lagerros Y, Forsum E, Litton J-E, Löf M. Daily
measures of physical activity through cell phones -- comparison against
accelerometer data. Accepted 2011 JMIR.
5.
Khatsanovskyy V, Litton J-E, Fomkin R. Improving security by using a
database management system for integrated data analysis. Accepted for PAIS
2011.
6.
Almqvist C, Adami H-O, Franks PW, Groop L, Ingelsson E, Kere J, Lissner L,
Litton J-E, Maeurer M, Michaëlsson K, Palmgren J, Pershagen G, Ploner A,
Sullivan PF, Tybring G, Pederson NL. LifeGene - a large prospective
population-based study of global relevance. European Journal of Epidemiology
(2010) 26:67-77
7.
Bexelius C, Lof M, Sandin S, Trolle Lagerros Y, Forsum E, Litton JE.
Measures of physical activity using cell phones: validation using criterion
methods. J Med Internet Res. 2010;12(1):e2.
8.
Bexelius C, Merk H, Sandin S, Nyren O, Kuhlmann-Berenzon S, Linde A,
Litton JE. Interactive voice response and web-based questionnaires for
population-based infectious disease reporting. Eur J Epidemiol. 2010
Oct;25(10):693-702.
*
9.
Fortier I, Burton PR, Robson PJ, Ferretti V, Little J, L'Heureux F, Deschenes
M, Knoppers BM, Doiron D, Keers JC, Linksted P, Harris JR, Lachance G,
Boileau C, Pedersen NL, Hamilton CM, Hveem K, Borugian MJ, Gallagher RP,
McLaughlin J, Parker L, Potter JD, Gallacher J, Kaaks R, Liu B, Sprosen T,
Vilain A, Atkinson SA, Rengifo A, Morton R, Metspalu A, Wichmann HE,
Tremblay M, Chisholm RL, Garcia-Montero A, Hillege H, Litton JE, Palmer LJ,
Perola M, Wolffenbuttel BH, Peltonen L, Hudson TJ. Quality, quantity and
harmony: the DataSHaPER approach to integrating data across bioclinical
studies. Int J Epidemiol. 2010 Sep 2.
10.
Honeth L, Bexelius C, Eriksson M, Sandin S, Litton JE, Rosenhall U, Nyren O,
Bagger-Sjoback D. An internet-based hearing test for simple audiometry in
nonclinical settings: preliminary validation and proof of principle. Otol Neurotol.
2010 Jul;31(5):708-14.
11.
Bexelius C, Merk H, Sandin S, Ekman A, Nyren O, Kuhlmann-Berenzon S,
Linde A, Litton JE. SMS versus telephone interviews for epidemiological data
collection: feasibility study estimating influenza vaccination coverage in the
Swedish population. Eur J Epidemiol. 2009;24(2):73-81.
12.
Fomkin R, Stenbeck M, Litton JE. Federated Databases as a Basis for
Infrastructure Supporting Epidemiological Research. Proceedings of the 20th
International Workshop on Database and Expert Systems Application.
2009:313-7
13.
Jonsdotter T, Thorsson J, Hvannberg ET, Litton J-E, Sigurdsson H. The Nordic
Common Data Element repository for describing cancer data. Int J Metadata,
Semantics and Ontologies. 2009;4(4):232-8.
*
14.
Ölund G, Brinne A, Lindqvist P, Litton JE. Unleashing genotypes in
epidemiology - A novel method for managing high throughput information. J
Biomed Inform. 2009;42:1029-34.
**
15.
Salminen-Mankonen H, Litton J-E, Bongcam-Rudloff E, Zatloukal K, Vuorio E.
BBMRI: The pan-European research infrastructure for biobanking and
biomolecular resources:managing resources for the future of biomedical
research. EMBnetnews. [Letter to the Editor]. 2009;15(2):3-8.
16.
Bexelius C, Honeth L, Ekman A, Eriksson M, Sandin S, Bagger-Sjoback D,
Litton JE. Evaluation of an internet-based hearing test--comparison with
established methods for detection of hearing loss. J Med Internet Res.
2008;10(4):e32.
**
17.
Yuille M, van Ommen G-J, Bréchot C, Cambon-Thomsen A, Bagher G,
Landegren U, Litton J-E, Pasterk M, Peltonen L, Taussig M, Wichmann H-E,
Zatloukal K. Biobanking for Europe. Brief Bioinform. 2008 Jan;9(1):14-24.
18.
Bexelius C, Hoeyer K, Lynoe N. Will forensic use of medical biobanks
decrease public trust in healthcare services? Some empirical observations.
Scand J Public Health. 2007;35(4):442-4.
19.
Ekman A, Klint A, Dickman PW, Adami HO, Litton JE. Optimizing the design of
web-based questionnaires - experience from a population-based study among
50,000 women. Eur J Epidemiol. [PDF, paper]. 2007;22(5):293-300.
*
20.
Ekman A, Litton JE. New times, new needs; e-epidemiology. Eur J Epidemiol.
[PDF, reprints]. 2007;22(5):285-92.
21.
Litton JE. Biobanking in relation to clinical information. Clin Chem Lab Med;
June 6, 2007; Amsterdam2007. p. S62.
*
22.
Muilu J, Peltonen L, Litton JE. The federated database--a basis for biobankbased post-genome studies, integrating phenome and genome data from
600,000 twin pairs in Europe. Eur J Hum Genet. [PDF, reprints]. 2007
Jul;15(7):718-23.
23.
Ölund G, Lindqvist P, Litton J-E. BIMS: An information management system
for biobanking in the 21st century. IBM Systems Journal. [PDF, paper].
2007;46(1):171-82.
24.
Ekman A, Dickman PW, Klint A, Weiderpass E, Litton JE. Feasibility of using
web-based questionnaires in large population-based epidemiological studies.
Eur J Epidemiol. [PDF, reprints]. 2006;21(2):103-11.
25.
Litton J-E, Ekman A, Dickman PW. The internet as a tool in population-based
epidemiological studies. In: Eysenback G, editor. Improving Public Health
through the Internet; October 13-20, 2006; Toronto, Canada2006. p. 79.
26.
Ekman A, Hall P, Litton JE. Can we trust cancer information on the Internet?-A comparison of interactive cancer risk sites. Cancer Causes Control. [PDF,
paper]. 2005;16(6):765-72.
27.
Litton JE, inventor An arrangement in a rheometer and a container for use in a
rheometer patent PCT/SE2004/001342. 2005.
28.
Ekman AK, Dickman PW, Hultman CM, Litton J-E. Using the internet as a tool
in epidemiological studies. Winter Workshop on Schizophrenia: Schizophrenia
Research; 2004. p. 238.
**
29.
Hultman CM, Stålberg G, Ekman AK, Litton J-E, Magnusson C. Web-based
screening of psychotic symptoms: possibilities and problems. Schizophrenia
Research2004. p. 82.
30.
Rosell M, Kann V, Litton J-E. Comparing comparisons: Document clustering
evaluation using two manual classifications. In: Sangal R, Bendre SM, editors.
International Conference on Natural Language Processing (ICON - 2004);
December 9-22, 2004; Hyderabad, India: Allied Publishers Private Limited;
2004. p. 207-16.
31.
Zimmerman Z, Swensson M, Reeve B, Betsou F, Ferguson M, Jallal B, Litton
J-E. Biobanks: accelerating molecular medicine, challenges facing the global
biobanking community. IDC special study #42962004.
1
APPENDIX C - LIST OF PUBLICATIONS (2004 and onwards)
LARS RYLANDER
1. ORIGINAL, PEER REVIEWED ARTICLES
(*) = five, for the project, most important papers
2004
53. Wallin E, Rylander L, Hagmar L. Exposure to persistent organochlorine
compounds through fish consumption and incidence of osteoporotic fractures. Scand J
Work Environ Med 2004;30:30-5.
54. Axmon A, Rylander L, Strömberg U, Hagmar L. Altered menstrual cycles in
women with a high dietary intake of persistent organochlorine compounds.
Chemosphere 2004;56:813-9.
55. Nilsson T, Lenhoff S, Rylander L, Höglund M, Turesson I, Mitelman F, Westin J,
Johansson B. High frequencies of chromosomal aberrations in multiple myeloma and
MGUS in direct chromosome preparation. Br J Haematol 2004;126:487-94.
56. Rignell-Hydbom A, Rylander L, Giwercman A, Jönsson BAG, Nilsson-Ehle P,
Hagmar L. Exposure to CB-153 and p,p’-DDE and male reproductive function. Hum
Reprod 2004;19:2066-75.
57. Axmon A, Rylander L, Strömberg U, Jönsson B, Nilsson-Ehle P, Hagmar L.
Polychlorinated biphenyls in serum and time to pregnancy. Environ Res 2004;96:18695.
58. Nilsson T, Nilsson L, Lenhoff S, Rylander L, Åstrand-Grundström I, Strömbäck B,
Höglund M, Turesson I, Westin J, Mitelman F, Jacobsen SEW, Johansson B.
MDS/AML-associated cytogenetic abnormalities in multiple myeloma and monoclonal
gammapathy of undetermined significance: Evidence for a frequent de novo occurrence
and multipotent stem cell involvement of del(20q). Genes Chromosomes Cancer
2004;41:223-31.
59. Malm G, Haugen TB, Henrichsen Y, Bjørsvik C, Grotmol T, Sæther T, Malm J,
Figenschau Y, Hagmar L, Rylander L, Levine RJ, Giwercman A. Reproductive
function during summer and winter in Norwegian men living north and south of the
Artic Circle. J Clin Endocrinol Metab 2004;89:4397-402.
2005
60. Rignell-Hydbom A, Rylander L, Giwercman A, Jönsson BAG, Lindh C, Eleuteri P,
Rescia M, Leter G, Cordelli E, Spano M, Hagmar L. Exposure to PCB and p,p’-DDE
and human sperm chromatin integrity. Environ Health Perspect 2005;113:175-9.
61. Rignell-Hydbom A, Rylander L, Elzanaty S, Giwercman A, Lindh CH, Hagmar L.
Human exposure to persistent organochlorine pollutants and seminal levels of
epidydimal and accessory sex gland function in Swedish men. Hum Reprod
2005;20:1910-4.
62. Jönsson B, Richthoff J, Rylander L, Giwercman A, Hagmar L. Urinary phthalate
metabolites and biomarkers of reproductive function in young Swedish males.
Epidemiology 2005;16:487-93.
63. Rylander L, Källén B. Reproductive outcomes among female hairdressers. Scand J
Work Environ Health 2005;31:212-7.
2
64. Tiido T, Rignell-Hydbom A, Jönsson BAG, Lundberg Giwercman Y, Rylander L,
Hagmar L, Giwercman A. Exposure to persistent organohalogen pollutants associates
with human sperm Y:X chromosome ratio. Hum Reprod 2005;20:1903-9.
65. Wallin E, Rylander L, Jönsson BAG, Lundh T, Isaksson A, Hagmar L. Exposure to
CB-153 and p,p’-DDE and bone mineral density and bone metabolism markers in
middle-aged and elderly men and women. Osteoporos Int 2005;16:2085-94.
66. Jönsson BAG, Rylander L, Lindh C, Rignell-Hydbom A, Giwercman A, Toft G,
Pedersen HS, Ludwicki JK, Zvezday V, Spano M, Bizarri D, Bonefeld-Jörgensen EC,
Manicardi GC, Bonde JP, Hagmar L. Inter-population variations in concentrations,
determinants of and correlations between 2,2’,4,4’,5,5’-hexachlorobiphenyl (CB-153)
and 1,1-dichloro-2,2-bis(p-chlorophenyl)-ethylene (p,p’-DDE) in 3161 men and women
from Inuit and European populations. Environ Health 2005;4:27 (doi:10.1186/1476069X-4-27).
67. Rylander L, Rignell-Hydbom A, Hagmar L. A cross-sectional study of the
association between persistent organochlorine pollutants and diabetes. Environ Health
2005;4:28 (doi:10.1186/1476-069X-4-28).
2006
68. Rylander L, Nilsson-Ehle P, Hagmar L. A simplified but accurate and precise
method for adjusting serum levels of persistent organohalogen pollutants to total serum
lipids. Chemosphere 2006;62:333-6.
69. Lynge E, Andersen A, Rylander L, Tinnerberg H, Lindbohm ML, Pukkala E,
Romundstad P, Jensen P, Björk Clausen L, Johansen K. Cancer in persons working in
dry cleaning in the Nordic countries. Environ Health Perspect 2006;114:213-219.
70. Giwerman A, Rylander L, Hagmar L, Lundberg Giwercman Y. Ethnic differences
in occurrence of TDS – genetics and/or environment? Int J Andrology 2006;29:291-7.
71. Axmon A, Rylander L, Hagmar L, Albin M. Factors affecting time to pregnancy.
Hum Reprod 2006;21:1279-84.
72. Tiido T, Rignell-Hydbom A, Jönsson BAG, Giwercman AL, Pedersen HS,
Wojtyniak B, Ludwicki JK, Lesovoy V, Zvyezday V, Spano M, Manicardi GC, Bizarro
D, Bonefeld-Jørgensen EC, Toft G, Bonde JP, Rylander L, Hagmar L, Giwercman A.
Impact of PCB and p,p’-DDE contaminants on human sperm Y:X chromosome ratio:
Studies in three European populations and the Inuit population in Greenland. Environ
Health Perspect 2006;114:718-24.
73. Nielsen J, Welinder H, Bensryd I, Rylander L, Skerfving S. Symptoms from eyes
and airways related to organic anhydride exposure – a prospective study. Allergy
2006;61:743-9.
74. Hagmar L, Wallin E, Vessby B, Jönsson BAG, Bergman Å, Rylander L. Intraindividual variations and time trends 1991-2001 in human serum levels of CB-153,
p,p’-DDE and hexachlorobenzene. Chemosphere 2006;64:1507-13.
75. Lundin KB, Giwercman YL, Rylander L, Hagmar L, Giwercman A. Androgen
receptor GGN repeat length and reproductive characteristics in young Swedish men. Eur
J Endocrin 2006;155:347-54.
76. Giwercman A, Rignell-Hydbom A, Toft G, Rylander L, Hagmar L, Lindh C,
Pedersen HS, Ludwicki J, Lesovoy V, Shevets M, Spano M, Manicardi GC, Bizarro D,
Bonefeld-Jørgensen E, Bonde JP. Reproductive hormone levels in men exposed to
persistent organohalogen pollutants: A study of Inuit and Three European cohorts.
Environ Health Perspect 2006;114:1348-53.
3
77. Rylander L, Wallin E, Jönsson BAG, Stridsberg M, Erfurth EM, Hagmar L.
Association between CB-153 and p,p’-DDE and hormone levels in serum in middleaged and elderly men. Chemosphere 2006;65:375-81.
78. Stronati A, Manicardi GC, Cecati M, Bordicchia M, Ferrante L, Spano M, Toft G,
Bonde JP, Hagmar L, Jönsson BAG, Rignell-Hydbom A, Rylander L, Giwercman A,
Pedersen HS, Bonefeld-Jørgensen EC, Ludwicki JK, Lesovoy V, Sakkas D, Bizarro D.
Relationships between sperm DNA fragmentation, sperm apoptotic markers and serum
levels of CB-153 and p,p’-DDE in European and Inuit populatons. Reproduction
2006;132:949-58.
79. Axmon A, Rylander L, Hagmar L, Lillienberg L, Albin M. Fertility among
Swedish female hairdressers. Scand J Work Environ Health 2006;32:51-60.
80. Elzanaty S, Rignell-Hydbom A, Jönsson BAG, Pedersen HS, Ludwicki JL, Shevets
M, Zvyezday V, Toft G, Bonde JP, Rylander L, Hagmar L, Bonefeld-Jørgensen E,
Spano M, Bizarro D, Manicardi GC, Giwercman A. Associations between exposure to
persistent organohalogen pollutants and epididymal and accessory sex gland function:
Multicentre study in Inuit and European populations Reprod Toxicol 2006;22:765-73.
2007
81. Rylander L, Strömberg U, Hagmar L. Weight and height at 4 and 7 years of age in
children born to mothers with a high intake of fish contaminated with persistent
organochlorines. Chemosphere 2007;67:498-504.
82. Lind ML, Albin M, Brisman J, Kronholm Diab K, Lillienberg L, Mikoczy Z,
Nielsen J, Rylander L, Torén K, Meding B. Incidence of hand eczema in female
Swedish hairdressers. Occup Environ Med 2007;64:191-5.
83. Giwercman A, Rylander L, Rignell-Hydbom A, Jönsson BA, Pedersen HS,
Ludwicki JK, Lesovoy V, Zvyezday V, Spano M, Manicardi GC, Bizarro D, BonefeldJørgensen E, Toft G, Bonde JP, Giwercman C, Tiido T, Giwercman Y and the Inuendo
research group. Androgen receptor gene CAG repeat length as modifier of the
association between persistent organochlorine pollutant exposure markers and semen
characteristics. Pharmacogenet Genomics 2007;17:391-401.
84. Rignell-Hydbom A, Rylander L, Hagmar L. Exposure to persistent organochlorine
pollutants and type 2 diabetes mellitus. Hum Exp Tox 2007;26:447-52.
85. Ruhayel Y, Malm G, Haugen TB, Henrichsen T, Björsvik C, Grotmol T, Saether T,
Malm J, Figenschau Y, Rylander L, Levine RJ, Giwercman A. Seasonal variations in
serum concentrations of reproductive hormone and urinary excretion of 6sulphatoxymelatonin in men living north and south of the Arctic Circle: A longitudinal
study. Clin Endocrinol 2007;67:85-92.
86. Tiido T, Rignell-Hydbom A, Jönsson BA, Rylander L, Giwercman A, Giwercman
YL. Modifying effect of the AR gene trinucleotide repeats and SNPs in the AHR and
AHRR genes on the association between persistent organohalogen pollutant exposure
and human sperm X:Y ratio. Mol Hum Reproduc 2007;13:223-9.
87. Holmer H, Svensson J, Rylander L, Johannsson G, Rosén T, Bengtsson BÅ,
Thorén M, Höybye C, Degerblad M, Bramnert M, Hägg E, Edén Engström B, Ekman B,
Norrving B, Hagmar L, Erfurth EM. Nonfatal stroke, cardiac disease, and diabetes
mellitus in hypopituitary patients on hormone replacement including growth hormone. J
Clin Endocrinol Metab 2007;92:3560-7.
88. Holmer H, Svensson J, Rylander L, Johannsson G, Rosén T, Bengtsson BA,
Thorén M, Höybye C, Degerblad M, Bramnert M, Hägg E, Engström BE, Ekman B,
4
Thorngren KG, Hagmar L, Erfurth EM. Fracture incidence in GH-patients on complete
hormone replacement including GH. J Bone Mineral Density Res 2007;22:1842-50.
89. Giwercman A, Rylander L, Giwercman YL. Influence of endocrine disrupters on
human male fertility. Reprod Biomed Online 2007;15:633-42. (*)
2008
90. Richthoff J, Elzanaty S, Rylander L, Hagmar L, Giwercman A. Association
between tobacco exposure and reproductive parameters in adolescent males. Int J
Androl 2008;31:31-9.
91. Scheike T, Rylander L, Carstensen L, Keiding N, Jensen TK, Strömberg U, Joffe
M, Akre O. Time trends in human fecundability in Sweden. Epidemiology
2008;19:191-6.
92. Bonde JP, Toft G, Rylander L, Rignell-Hydbom A, Giwercman A, Spano M,
Manicardi CG, Bizzaro D, Ludwicki JK, Zvyezday V, Bonefeld-Jørgensen, Pedersen
HS, Jönsson BAG, Thulstrup AM, and INUENDO. Fertility and markers of male
reproductive function in Inuit and European populations spaning large contrasts in
blood levels of persistent organochlorines. Environ Health Perspect
2008;116:269-77. (*)
93. Axmon A, Rylander L, Rignell-Hydbom A. Reproductive toxicity of seafood
contaminants: Prospective comparisons of Swedish east and west coast fishermen’s
families. Environ Health 2008;7:20.
2009
94. Axmon A, Rylander L. Birth weight and fetal growth in infants born to female
hairdressers and their sisters. Occup Environ Med 2009;66:198-204 (Epub 2008 Nov
18).
95. Mikoczy Z, Rylander L. Mortality and cancer incidence in cohorts of Swedish
fishermen and fishermen’s wives: updated findings. Chemosphere 2009;74:938-43.
(Epub 2008 Nov 28).
96. Rantakokko P, Kiviranta H, Rylander L, Rignell-Hydbom A, Vartiainen T. A
simple fast liquid-liquid extraction method for the determination of 2,2’,4,4’,5,5’hexachlorobiphenyl (CB-153) and 1,1-dichloro-2,2-bis(p-chlorophenyl)-ethylene(p,p’DDE) from human serum for epidemiological studies on type 2 diabetes J Chromatogr
A 2009;1216:897-901. (Epub 2008 Dec 10) .
97. Eberhard J, Ståhl O, Cohn-Cedermark G, Cavallin-Ståhl E, Giwercman Y,
Rylander L, Eberhard-Gran M, Fugl-Meyer K, Giwercman A. Sexual function in men
treated for testicular cancer. J Sexual Med 2009;6:1979-89 (Epub 2009 Apr 28).
98. Rylander L, Hagmar L, Wallin E, Sjöström AK, Tysklind M. Intra-individual
variations and time trends in dioxin levels in human blood during 1987-2002.
Chemosphere 2009;6:1979-89 (Epub ahead 2009 June 25).
99. Axmon A, Rylander L. No interaction between smoking and working as a
hairdresser with respect to reproductive health. J Occup Environ Med 2009;51:399-400
(authors reply – including new results).
100. Eberhard J, Ståhl O, Cohn-Cedermark G, Cavallin-Ståhl E, Giwercman Y,
Rastkhani H, Rylander L, Eberhard-Gran M, Kvist U, Giwercman A. Emotional
disorders in testicular cancer survivors in relation to hypogonadism, androgen receptor
polymorphism and treatment modality. J Affect Disord (Epub 2009 Aug 3).
5
101. Rylander L, Wetterstrand B, Haugen T, Malm G, Malm J, Bjørsvik C, Henrichsen
T, Sæther T, Giwercman A. Single semen analysis as predictor of semen quality:
clinical and epidemiological applications. Asian J Androl 2009;11:723-30 (Epub 2009
Oct 12).
102. Rignell-Hydbom A, Lidfeldt J, Kiviranta H, Rantakokko P, Samsioe G, Agardh
CD, Rylander L. p,p’-DDE: A risk factor for type 2 diabetes. PLoS One 2009 Oct
19;4(10):e7503. (*)
2010
103. Giwercman A, Lindstedt L, Larsson M, Bungum M, Spano M, Levine RJ,
Rylander L. DFI och fertilitet. Sperm Chromatin Structure Assay as an independent
predictor of fertility in vivo: A case-control study. Int J Androl 2010;33(1):e221-7.
(Epub 2009 Oct 15).
104. Nenonen H, Björk C, Skjaerpe PA, Giwercman A, Rylander L, Svartberg J,
Giwercman YL. CAG repeat is not inversely associated with androgen receptor activity
in vitro. Mol Hum Reprod 2010;16:153-7 (Epub 2009 Nov 1).
105. Axelsson J, Bonde JP, Giwercman YL, Rylander L, Giwercman A. Geneenvironment interaction and male reproductive function. Asian J Androl 2010;12:298307. (Epub 2010 Mar 29).
106. Ruhayel Y, Giwercman A, Ulmert D, Rylander L, Bjartell A, Manjer J, Berglund
G, Giwercman YL. Male fertility and prostate cancer risk: a nested case-control study.
Cancer Causes Control 2010;21:1635-43. (Epub 2010 Jun 4).
107. Rignell-Hydbom A, Elfving M, Ivarsson SA, Lindh C, Jönsson BA, Olofsson P,
Rylander L. A nested case-control study of intrauterine exposure to persistent
organochlorine pollutants in relation to type 1 diabetes. PLoS One 2010 Jun
23;5(6):e11281. (*)
108. Wojtyniak B, Rabczenko D, Jönson BA, Zvezday V, Pedersen HS, Rylander L,
Toft G, Ludwicki JL, Góralczyk K, Lesovaya A, Hagmar L, Bonde JP and the Inuendo
research group. Association of maternal serum concentrations of 2,2’,4,4’,5,5’hexachlorobiphyl (CB-153) 1,1-dichloro-2,2-bis(p-chlorophenyl)-ethylene (p,p’-DDE)
levels with birth weight, gestational age and preterm births in Inuit and European
populations. Environ Health 2010 Sep 6;9:56.
2011
109. Lynge E, Tinnerberg H, Rylander L, Romundstad P, Johansen K, Lindbohm ML,
Heikkilä P, Westberg H, Clausen LB, Piombino A, Thorsted BL. Exposure to
tetrachloroethylene in dry cleaning shops in the Nordic countries. Ann Occup Hyg 2011
Feb 3 [Epub ahead of print].
110. Malmqvist E, Rignell-Hydbom A, Tinnerberg H, Björk J, Stroh E, Jakokbsson K,
Rittner R, Rylander L. Maternal exposure to air pollution and birth outcomes. Environ
Health Perspect 2011 Jan 6 [Epub ahead of print].
111. Ståhl O, Boyd H, Giwercman A, Lindholm M, Jensen A, Krüger Kjær S, Anderson
H, Cavallin-Ståhl E, Rylander L. Risk of birth abnormalities in the offspring of men
with a history of cancer: a cohort study using Dansih and Swedish national registries.
JNCI 2011;103:398-406. [Epub ahead 2011 Feb 8]. (*)
112. Axelsson J, Rylander L, Rignell-Hydbom A, Giwercman A. No secular trend in
sperm counts among Swedish men from the general population [Epub ahead of print
2011 Mar 7].
6
2. EXTENDED CONFERENCE ABSTRACT
1. Hagmar L, Wallin E, Jönsson BAG, Rylander L. Persistent oorganochlorine
pollutants and risk for skeletal fractures and impaired bone mineral density in humans –
results from the “COMPARE project”. 24th International Symposium on Halogenated
Organic Pollutants and POPs - Dioxin 2004.
2. Rignell-Hydbom A, Rylander L, Giwercman A, Spano M, Jönsson BAG, Hagmar L.
Exposure to CB-153 and p,p’-DDE and human sperm chromatin integrity. 24th
International Symposium on Halogenated Organic Pollutants and POPs - Dioxin 2004.
3. Rylander L, Jönsson BAG, Lindh C, Rignell-Hydbom A, Giwercman A, Toft G,
Pedersen H, Ludwicki J, Zvyezday V, Spano M, Bizzaro D, Bonefeld-Jörgensen E,
Manicardi G, Bonde J, Hagmar L. CB-153 and p,p’-DDE in Inuits and Europeans. 25th
4. Rylander L, Strömberg U, Hagmar L. Exposure to persistent organochlorine
pollutants in relation to weight and height at 4 and 7 years of age. 25th International
Symposium on Halogenated Organic Pollutants and POPs - Dioxin 2005.
5. Rignell-Hydbom A, Tiido T, Jönsson B, Lundberg Giwercman Y, Rylander L,
Hagmar L, Giwercman A. Exposure to organochlorine pollutants and human sperm Y:X
ratio. 25th International Symposium on Halogenated Organic Pollutants and POPs Dioxin 2005.
6. Rignell-Hydbom A, Rylander L, Hagmar L. Exposure to organochlorine pollutants
and Type 2 diabetes mellitus. 26th International Symposium on Halogenated Organic
Pollutants and POPs - Dioxin 2006.
7. Rylander L. POP exposure and reproductive outcomes – Studies among fishermen’s
families from Sweden. 26th International Symposium on Halogenated Organic
Pollutants and POPs - Dioxin 2006.
8. Rylander L, Wallin E, Sjöström AK, Tysklind M. Intra-individual variations and
temporal trends in dioxin levels in human blood 1987 to 2002. 28th International
9. Rylander L, Rignell-Hydbom A, Elfving M, Ivarsson SA, Lindh C, Jönsson BAG,
Olofsson P, Lernmark Å. The asscoation between intrauterine exposure to persistent
organochlorine pollutants and type 1 diabetes: A case-control study. 29th International
10. Björk C, Neneonen H, Giwercman A, Bergman Å, Rylander L, Lundberg
Giwercman Y. The impact of CB-153 and p,p’-DDE on androgen receptor function.
29th International Symposium on Halogenated Organic Pollutants and POPs - Dioxin
2009.
11. Rignell-Hydbom A, Lidfeldt J, Kiviranta H, Rantakokko P, Samsioe G, Agardh CD,
Rylander L. Persistent organochlorine pollutants: A risk factor for type 2 diabetes. 29th
3. BOOK CHAPTER
1. Giwercman A, Rylander L. Blir spermier sämre av kemikalier? Bokkapitel i “Giftfri
miljö – utopi eller chans? Utgiven av Formas Fokuseras. 2006.
7
2. Giwercman A and Rylander L (2011) Persistent organohalogen pollutants and
phthalates: effects on male reproductive function. In: Nriagu JO (ed.) Encyclopedia of
Environmental Health, volume 4, pp. 387–394 Burlington: Elsevier.
4. PATENT
None.
5. DEVELOPMENT OF COMPUTER PROGRAMME
None.
6. POPULATION SCIENCE ARTIKELS
1. Hagmar L, Rylander L, Wallin E. Fisk och frakturer – Påverkar konsumtion av fet
östersjöfisk frakturrisken? Bulletinen från Arbets- och miljömedicin vid Lunds
universitet/Lunds universitetssjukhus (som finns allmänt tillgänglig på nätet) 2004;1:11.
2. Rylander L. Miljögifter och spermiekvalitet – prisad avhandling. Bulletinen
2006;4:2.
3. Tinnerberg H, Rylander L. Exponering för tetrakloretylen bland kemtvättare och
cancerrisk. Bulletinen 2007;1:4.
4. Rylander L. FMS (Föreningen Medicinsk Statistik) Vårmöte – Epidemiologi och
genetic. Svepet (Svensk epidemiologisk förenings medlemstidning som finns allmänt
tillgänglig på nätet) 2007;2:6.
5. Rignell-Hydbom A, Rylander L. Kan man få diabetes av miljögifter? Bulletinen
2007;4:7.
6. Rylander L. STROBE – En hjälp för oss alla! Svepet 2009;2:4-5.
7. Rignell-Hydbom A, Rylander L. Samband mellan persistenta klororganiska
miljögifter och typ 2 diabetes. Bulletinen 2009;4:11.
1
Mats G. Hansson,, Publications 2003-2011
1. Refereed articles
1.
Stjernschantz-Forsberg J, Hansson MG, Eriksson S, A too limited view on
participants’ interests, Letter, Science (In Press).
2.
Hansson MG, Biobanking within the European regulatory framework –
opportunities and obstacles, Biopreservation and Biobanking, (In Press)
3.
Atry A, Hansson MG, Kihlbom U, Gene doping and the responsibility of
bioethicists, Sports, Ethics & Philosophy (In press)
4.
Hansson MG, Chadwick R, Is medical ethics doing its job?, Journal of Internal
Medicine 2011;269(4):366-369.
5.
Magnusson H, Felländer-Tsai L, Hansson MG, Ryd L, Cancellations of
elective surgery may cause an inferior postoperative course. The ”invisible hand”
of health care prioritization?, Clinical Ethics (In Press).
6.
Masterton M, Hansson MG, Höglund AT, In search of the missing subject.
Narrative identity and poshmous wronging, Studies in History and Philosophy of
Biological and Biomedical Sciences (In press).
7.
Johnsson L, Helgesson G, Rafnar T, Halldorsdottir I, Chia KS, Eriksson S,
Hansson MG., Hypothetical and factual willingness to participate in biobank
research, Eur J Hum Genet. 2010;18(11):1261-1264
8.
*Hansson MG, Do we need a wider view of autonomy in epidemiological
research?, British Medical Journal 2010;340:c.2335,1172-1174.
9.
Hansson MG, Hakama M, Ulysses contracts for the doctor and for the
patient, Contemporary Clinical Trials 2010;31(4):202-206.
10.
Stjernschantz Forsberg J, Eriksson S, Hansson MG, Changing defaults in
biobank research could save lives too. European Journal of Epidemiology
2010;25(2):65-68.
11. Hansson, M,G, Maschke, K, Questioning distinctions, Letter, Science,
2009;326(5954): 797.
12. Truyers C, Kellen E, Arbyn M, Trommelmans L, Nys H, Hensen K, Aertgeerts
B, Bartholomeeusen S, Hansson M, Buntinx F, The use of human tissue in
epidemiological research; Ethical and legal considerations in two biobanks in
Belgium, Medicine, Health Care and Philosophy 2010;13(2):169-175.
13. *Hansson, MG, Taking the patient’s side: the ethics of pharmacogenetics,
Personalized Medicine, 2010;7(1):75-85.
14. *Ferm Widlund, K, Gunnarsson, C, Nordin, K, Hansson, MG, Pregnant women
are satisfied with the information they receive about prenatal diagnosis, but are
they well informed?, Acta Obstetrica et Gynecologica Scandinavica, 2009;88
(10):1128-1132.
15. Stjernschantz Forsberg, J, Hansson, MG, Eriksson, S, Changing perspectives in
biobank research – from individual rights to concerns about public health
regarding the return of results, European Journal of Human Genetics
2009;17(12):1544-1549.
16. *Swartling, U, Helgesson, G, Hansson, MG, Ludvigsson, J, Split views among
parents regarding children’s right to decide about participation in research: a
questionnaire survey, Journal of Medical Ethics 2009;35(7):450-455.
17. Hansson, MG, Kihlbom, U, Tuvemo, T, Rodriguez, A, Concern for privacy in
relation to age in physical examination in children: An exploratory study, Acta
Paediatrica 2009;98(8):1349-1354.
2
18. Helgesson, G, Hansson, MG, Ludvigsson, J, Swartling, U, What parents find
important when participating in longitudinal studies: results from a questionnaire,
Clinical Ethics, In Press.
19. *Hultman, CM, Lindgren,A-C, Hansson, MG, Carlstedt-Duke, J, Ritzen, M,
Persson, I, Kieler, H, Ethical Issues in Cancer Register Follow-up of Hormone
Treatment in Adolescence, Public Health Ethics 2009; 2 (1):30-36
20. *Helgesson, G, Hansson, MG, Ludvigsson, J, Swartling, U, Practical matters,
rather than lack of trust, motivate non-participation in a long-term cohort trial,
Pediatric Diabetes, 2009;10(6):408-412.
21. Hansson, MG, Ethics and biobanks, British Journal of Cancer 2009;100:8-12.
22. *Johnsson, L., Hansson M.G., Eriksson, S., Helgesson, G., Opt-out from
biobanks better respects patients’ autonomy, British Medical Journal,
2008;337:a1580.
23. Johnsson, L., Hansson M.G., Eriksson, S., Helgesson, G., Patient’s refusal to
consent to storage and use of samples in Swedish biobanks: cross-sectional study,
British Medical Journal, 2008;337:p.a345-a345.
24. *Swartling, U., Helgesson, G., Hansson, M.G., Ludvigsson, J., Parental authority,
research interests and children’s right to decide in medical research – an uneasy
tension?, Clinical Ethics 2008;3:69-74.
25. Helgesson, G., Dillner,J., Carlson, J., Bartram, C.R., Hansson, M.G., Ethical
framework for previously collected biobank samples, Nature Biotechnology
2007;25:973-976.
26. Kälvemark Sporrong, S., Arnetz, B., Westerholm, P., Hansson, Höglund, AT,
No short cuts - developing ethical competence in health care organizations,
Nursing Ethics 2007;(14)825-837..
27. Hansson, M.G., Kihlbom, U., Tuvemo, T, Olsen, L., Rodriguez, A., Ethics takes
time, but not that long, BMC Medical Ethics 2007; May 24;8(1):6
28. Hansson, M.G., Helgesson, G., Wessman, R., Jaenisch, R., Isolated stem cells –
patentable as cultural artifacts?, Stem Cells 2007;25:1507-1510.
29. Hansson, M.G., For the safety and benefit of current and future patients,
Pathobiology 2007;74:198-205.
30. Hansson, M.G., Dillner, J., Bartram, C.R., Carlsson, J., Helgesson, G., Should
donors be allowed to give broad consent to future biobank research?, The Lancet
Oncology 2006; 7:266-269.
31. Masterton, M., Helgesson, G., Höglund, A.T., Hansson, M.G., Queen Christina’s
moral claim on the living – justification of a tenacious moral intuition, Medicine,
Health Care and Philosophy 2007;10:321-327.
32. Masterton, M., Hansson, M.G., Höglund, A.T., Helgesson, G., Can the dead be
brought into disrepute?, Theoretical Medicine and Bioethics 2007;28:137-149.
33. Illes, J.,.Blakemore, C., Hansson. M.G Hensch, T., Leshner, A., Maestre, G.,
Magistretti, P., Quirion, R., Strata, P., International perspectives on engaging the
public in neuroethics, Nature Reviews Neuroscience 2005; 6:977-982.
34. Hansson, M.G., Building on relationships of trust in biobank research, Journal
of Medical Ethics 2005;31:415-418.
35. Hansson, M.G., The ethics of PGD-regulation, in: Ingileif Jonsdottir, I.. (ed.),
PGD and Embryo Selection, The Nordic Committee on Bioethics, Copenhagen 2006,
82-92.
36. Hansson, M.G., Justice and solidarity with the old – two complementary moral
concerns in health care, in: Matthews, E. (ed.), A Crisis of Aging, Nuffield Report (In
press).
3
37. Hansson, M.G., Combining efficiency and concerns about integrity when
using human biobanks, Studies in History and Philosophy of the Biological and
Biomedical Sciences 37 (2006) 520-532.
38. *Strømsvik,N., Nordin, K., Berglund, G., Engebretsen, L.F., Hansson,M.G.,
Gjengedal, E., Living with MEN 1. Living with Multiple Endocrine Neoplasia Type 1.
Decent Care- Insufficient Medical and Genetic Information. Journal of Genetic
Counseling 2007; 16:105-117.
39. *Kettis-Lindblad, Å., Ring, L., Viberth, E., Hansson, M.G., Perceptions of
potential donors in the Swedish public towards information and consent
procedures in relation to use of human tissue samples in biobanks: population
based study, Scandinavian Journal of Public Health 2007;35(2):148-156.
40. Kälvemark, S., Höglund, A.T., Hansson, M.G., Westerholm, P., Arnetz, B., Living
with conflicts. Ethical dilemmas and moral distress in the health care system,
Social Science & Medicine, 2004, Vol. 58/6, 1075-1084.
41. Kälvemark Sporrong, S., Höglund, A.T., Hansson, M.G., Westerholm, P., Arnetz,
B., ”We are white coats whirling round” – Moral Distress in Swedish Pharmacies,
Pharmacy World & Science, 2005; 27:223-229.
42. Rodriguez, A., Tuvemo, T., Hansson, M.G., Children in Medical Research: The
Parental Perspective. Upsala Journal of Medical Sciences 2006;111(1):73-86.
43. *Kettis Lindblad, Å., Ring, L., Viberth, E., Hansson, M.G., Genetic research and
donation of tissue samples to biobanks. What do potential sample donors in the
Swedish general public think?, European Journal of Public Health, 2006 16 (4):43340.
44. *Lidén, A., Berglund, G., Hansson, M.G., Rosenquist, R., Sjödén, P-O., Nordin, K.,
Genetic Counselling for Cancer and Risk Perception, Acta Oncologica, 2003, Vol.42,
No.7, pp.726-734.
45. *Berglund, G., Lidén, A., Hansson, M.G., Sjödén, P-O., Öberg, K., Nordin, K.,
Quality of life in patients with Multiple Endocrine Neoplasia Type 1 (MEN 1),
Familial Cancer, 2:27-33, 2003.
46. Hansson, M.G., Att respektera människor som moraliskt och politiskt
myndiga – Om integritet som etiskt begrepp med tillämpning på medicinsk
forskning, Annales. Academiae Regiae Scientiarum Upsaliensis,35, 2003, 57-65.
3. Reviews, book chapters and peer reviewed books
47.
Bergqvist D, Blomgren L, Hansson MG, Cost and reimbursement influence
on treatment strategy: ethical?, in: Wittens C (ed) Advances in venous therapy. Ed
Minerva Medica. Turin 2011, p.9-13. (ISBN 13:978-88-7711-703-8).
48. Hansson, M.G., The need to down regulate. A minimal ethical framework for
biobank research, in: Dillner, J. (ed), Methods in Biobanking, Methods in Molecular
Biology Book Series No 675, p.39-59. The Humana press, Springer 2011.
49. *Hansson, M.G, The Private Sphere. An emotional territory and its agent,
Springer, Philosophical Studies in Contemporary Culture, Monograph, 182p. 2008.
50. Hansson, M.G., Integritet - i spänningen mellan avskildhet och delaktighet,
monography 304 p. Carlsson Förlag, Stockholm 2006.
51. Hansson, M.G., Levin, M., (eds.), Biobanks as resources for health, Uppsala
University, 2003, 276p.
Scientific publications Staffan Lindblad
1. Scientific production 2003 onwards
Original papers
1. **Stolt P, Bengtsson C, Nordmark B, Lindblad S, Lundberg I, Klareskog L,
Alfredsson L, EIRA Study Group. Quantification of the influence of cigarette
smoking on rheumatoid arthritis: results from a population based case-control study,
using incident cases. Ann Rheum Dis 2003, 62: 835-841
2. Wick MC, Lindblad S, Klareskog L, van Vollenhoven RF. Relationship between
inflammation and joint destruction in early rheumatoid arthritis: a mathematical
description. Ann Rheum Dis 2004, 63: 848-852
3. Wick MC, Lindblad S, Weiss RJ, Klareskog L, van Vollenhofen RF. Clinical and
radiological disease-course in a Swedish DMARD-treated early RA inception cohort:
an observational study. Scand J Rheumatol 2004, 33: 380-384
4. Harringe ML, Lindblad S, Werner S. Do team gymnasts compete in spite of
symptoms from an injury? Br J Sports Med 2004, 38: 398-401
5. Wick MC, Lindblad S, Weiss RJ, Klareskog L, van Vollenhofen RF. Estimated
prediagnosis radiological progression: an important tool for studying the effects of
early disease modifying antirheumatic drug treatment in rheumatoid arthritis. Ann
Rheum Dis 2005, 64: 134-137
6. Feltelius N, Fored CM, Blomqvist P, Bertilsson L, Geborek P, Jacobsson LT,
Lindblad S, Lysholm J, Rantapaa-Dahlqvist S, Saxne T, Klareskog L, ARTIS Group.
Results from a nationwide postmarketing cohort study of patients in Sweden treated
with etanercept. Ann Rheum Dis 2005, 64: 246-252
7. Olsson J, Terris D, Elg M, Lundberg J, Lindblad S. The one-person randomized
controlled trial. Q Manage Health Care, 2005, 14: 206-216
8. Wick MC, Ernestam S, Lindblad S, Bratt J, Klareskog L, van Vollenhoven RF.
Adalumimab (Humira) restores clinical response in patients with secondary loss of
efficacy from infliximab (Remicade) or etanercept (Enbrel): Results from the STURE
registry. Scand J Rheumatol 2005, 34: 353-358
9. **Askling J, Fored CM, Baecklund E, Brandt L, Backlin C, Ekbom A, Sundström C,
Bertilsson L, Cöster L, Geborek P, Jacobsson LT, Lindblad S, Lysholm J, RantapääDahlqvist S, Saxne T, Klareskog L, Feltelius N. Hematopoetic malignancies in
rheumatoid arthritis: Lymphoma risk and characteristics after exposure to tumor
necrosis factor antagonists. Ann Rheum Dis 2005, 64: 1414-1420
10. **Askling J, Fored CM, Brandt L, Baecklund E, Bertilson L, Feltelius N, Cöster L,
Geborek P, Jacobsson LT, Lindblad S, Lysholm J, Rantapää-Dahlqvist S, Saxne T,
Klareskog L. Risks of solid cancers in patients with rheumatoid arthritis and after
treatment with tumor necrosis factor antagonists. Ann Rheum Dis 2005, 64: 14211426
11. Askling J, Fored CM, Brandt L, Baecklund E, Bertilson L, Cöster L, Geborek P,
Jacobsson LT, Lindblad S, Lysholm J, Rantapää-Dahlqvist S, Saxne T, Romanus V,
Klareskog L, Feltelius N. Risk and case characteristics of tuberculosis in rheumatoid
arthritis associated with TNF-antagonists in Sweden. Arthritis Rheum 2005, 52:
1986-1992
12. Rönnelid J, Wick MC, Lampa J, Lindblad S, Nordmark B, Klareskog L, van
Vollenhoven RF. Longitudinal analysis of citrullinated protein / peptide antibodies
(anti-CP) during five year follow up in early rheumatoid arthritis: anti-CP status
predicts worse disease activity and greater radiologic progression. Ann Rheum, 2005,
64: 1744-1749
Scientific publications, Staffan Lindblad 2011-04-18
1
13. Cullinane-Carli C, Ehlin A, Klareskog L, Lindblad S, Montgomery SM, Swedish
Rheumatoid Artritis register. Trends in DMARD prescription in early rheumatoid
arthritis are influenced by hospital setting. Ann Rheum Dis, 2006, 65: 1102-1105.
Epub 2005 Dec 1
14. Eurenius E, Brodin N, Lindblad S, Opava CH, PARA study group. Prediciting
physical activity and general health perception among patients with rheumatoid
arthritis. J Rheumatol 2007;34;10-15.
15. Olsson J, Elg M, Lindblad S. System characteristics of healthcare organizations
conducting successful improvements. J Health Organ Manag, 2007;21(3):283-96
16. Askling J, Fored M, Brandt L, Baecklund E, Bertilsson L, Feltelius N, Cöster
L, Geborek P, Jacobsson L T, Lindblad S, Lysholm J, Rantapää-Dahlqvist S,
Saxne T, van Vollenhoven RF, Klareskog L. Time-dependant increase in risk
of hospitalisation with infection among Swedish RA-patients treated with
TNF-antagonists. Ann Rheum Dis. 2007 Oct;66(10):1339-44.
17. Cullinane-Carli C, Briges JFP, Ask J, Lindblad S, Swedish Rheumatoid
Artritis register. Charting the possible impact of national guidelines on the
management of rheumatoid arthritis. Scand J Rheumatol, 2008;37:188-193
18. Askling J, Baecklund E, Granath F, Geborek P, Fored M, Backlin C, Bertilsson
L, Cöster L, Jacobsson LT, Lindblad S, Lysholm J, Rantapää-Dahlqvist S, Saxne T,
van Vollenhoven R, Klareskog L, Feltelius N. Anti-tumour necrosis factor therapy
in rheumatoid arthritis and risk of malignant lymphomas: relative risks and time
trends in the Swedish Biologics Register. Ann Rheum Dis. 2009 May;68(5):648-53.
Epub 2008 May 8. PubMed PMID: 18467516.
19. **Askling J, van Vollenhoven RF, Granath F, Raaschou P, Fored CM, Baecklund E,
Dackhammar C, Feltelius N, Cöster L, Geborek P, Jacobsson LT, Lindblad S,
Rantapää-Dahlqvist S, Saxne T, Klareskog L. Cancer risk in patients with rheumatoid
arthritis treated with anti-tumor necrosis factor alpha therapies: does the risk change
with the time since start of treatment? Arthritis Rheum. 2009 Nov;60(11):3180-9.
PubMed PMID: 19877027.
20. af Klint E, Catrina AI, Matt P, Neregråd P, Lampa J, Ulfgren AK, Klareskog L,
Lindblad S. Evaluation of arthroscopy and macroscopic scoring. Arthritis Res
Ther. 2009;11(3):R81. Epub 2009 Jun 2. PubMed PMID: 19490631; PubMed Central
PMCID: PMC2714131
21. Hvitfeldt H, Carli C, Nelson EC, Mortenson DM, Ruppert BA, Lindblad S. Feed
forward systems for patient participation and provider support: adoption results
from the original US context to Sweden and beyond. Qual Manag Health Care. 2009
Oct-Dec;18(4):247-56. PubMed PMID: 19851232.
22. Edenius, M., Keller, C. & Lindblad, S. (2010). Managing knowledge across
boundaries in healthcare when innovation is desired. Knowledge Management and Elearning; An International Journal (KM&EL). Special issue on E-health: Accessing
Knowledge for Global Health, 2(2), 134-153.
23. D'Amato M, Zucchelli M, Seddighzadeh M, Anedda F, Lindblad S, Kere
J,Alfredsson L, Klareskog L, Padyukov L. Analysis of neuropeptide S receptor
gene(NPSR1) polymorphism in rheumatoid arthritis. PLoS One. 2010 Feb
22;5(2):e9315.PubMed PMID: 20179762; PubMed Central PMCID: PMC2825264.
24. **Saevarsdottir S, Wedrén S, Seddighzadeh M, Bengtsson C, Wesley A, Lindblad S,
Askling J, Alfredsson A, Klareskog L. Patients with early rheumatoid arthritis who
smoke are less likely to respond to treatment with methotrexate and TNF inhibitors.
Observations from the EIRA cohort and the Swedish Rheumatology Register.
Arthritis Rheum 2010, sep 22(Epub ahead of print) PubMed PMID: 20862678
25. Hvitfeldt-Forsberg H, Aronsson H, Keller C, Lindblad S. Managing health care
decisions and improvement through simulation modeling. Q Manag Health Care,
2011, 20, 15-29.
26. Simard JF, Arkema EV, Sundström A, Geborek P, Saxne T, Baecklund E, Cöster L,
Dackhammar C, Jacobsson L, Feltelius N, Lindblad S, Rantapaa-Dahlqvist S,
2
Klareskog L, v Vollenhoven RF, Neovius M Askling J. Ten years with biologics; to
whom do data on effectiveness and safety apply? Rehumatology 2011, 50, 204-13
Refereed conference proceedings
1. Keller, C., Gäre, K., Edenius, M. & Lindblad, S. (2009). Designing for Complex
Innovations in Health Care: Design Theory and Realist Evaluation Combined. In
Proceedings of DESRIST the 4th International Conference on Design Science
Research in Information Systems and Technology 2009, in Malvern, Pennsylvania,
USA.
2. Keller, C., Edenius, M. & Lindblad, S. (2009). Adopting proactive knowledge use as
an innovation: The case of a knowledge management system in rheumatology. In
Proceedings of the International Conference on Information Systems (ICIS) 2009,
Phoenix, Arizona, USA.
Review papers
1. Klareskog L, Lindblad S: How is clinical progress achieved? Best Pract Res Clin
Rheumatol 2004, 18, 1-5
2. Askling J, Fored CM, Geborek P, Jacobsson LT, van Vollenhoven R, Feltelius N,
Lindblad S, Klareskog L. Swedish registers to examine drug safety and clinical
issues in RA. Ann Rheum Dis. 2006 Jun;65(6):707-712. Epub 2006 Jan 13.
Chapters in text-books
1. Lindblad S. Clinical diagnostic work up and joint examination techniques (in
Swedish). Chapter 35 in Klareskog L, Saxne T, Enman Y. Reumatologi,
Studentlitteratur 2005, second edition 2009.
2. Lindblad S. Joint injection techniques (in Swedish). Chapter 36 in Klareskog L,
Saxne T, Enman Y. Reumatologi, Studentlitteratur 2005, second edition 2009.
3. Keller, C., Edenius, M. & Lindblad, S. Open service innovation in health care: What
can we learn from open innovation communities? Proposal accepted to be developed
into a book chapter in J. Eriksson-Lundström, S. Hrastinski, P. J. Ågerfalk & M.
Edenius (Eds.) Managing Open Innovation Technologies. Springer Verlag, Berlin
Heidelberg.
3
Urban Lindgren
660219-8514
Publications 2002Peer review publications (journal papers and book chapters)
Tammaru T, Strömgren M, Stjernström O & Lindgren U. (2010): Learning through contact?
The effects on earnings of immigrant exposure to the native population. Environment and
Planning A, 42, pp. 2938-2955. (*)
Lindgren E, Pettersson T, & Lindgren U. (2010): Driving from the centre to the periphery?
The diffusion of private cars in Sweden, 1960-1975. Journal of Transport History, 31:2.
Keskitalo C, Nordlund A & Lindgren U. (2009): Att skapa grunden för beslut i
kärnavfallsfrågan. In SKB: Samhällsforskning 2009 – Betydelsen för människorna,
hembygden och regionen av ett slutförvar för använt kärnbränsle, Svensk
Kärnbränslehantering AB, Stockholm, 96-120.
Boschma R, Eriksson R & Lindgren U. (2009): Does Labour Mobility Affect the Performance
of Plants? – The importance of relatedness and geographical proximity. Journal of Economic
Geography, 2009;9:169-190. (*)
Wenjuan L, Holm E & Lindgren U. (2009): Attractive Vicinities. Population, Space and
Place, 15:1-18.
Eriksson R & Lindgren U. (2009): Localised Mobility Clusters: Impacts of labour market
externalities on firm performance. Journal of Economic Geography, 9:33-53. (*)
Eriksson R, Lindgren U & Malmberg G. (2008): Agglomeration mobility: effects of
localisation, urbanisation and scale on job changes. Environment and Planning A, 40:24192434. (*)
Holm E, Lindgren U, Häggström Lundevaller E & Strömgren M. (2007): SVERIGE. In: W.A.
Barnett (Series Ed.) Gupta, A. & Harding, A. (Volume Eds.): Modelling Our Future –
Population Ageing, Health and Aged Care (International Symposia in Economic Theory and
Econometrics, Elsevier, Amsterdam. Vol 16, pp. 543-549.
Lindgren E, Sullivan K, Lindgren U & Spelman Miller K. (2007): GIS for Writing: Applying
Geographical Information Systems Techniques to Data Mine Writings’ Cognitive Processes.
In: G. Riljaarsdam (Series Ed.); Galbraith, D., Torrence, M. & Van Waes, L. (Volume Eds.)
Writing and cognition: Research and applications (Studies in writing), Elsevier, Amsterdam.
Vol 20, pp. 83-96.
Tollefsen A & Lindgren U. (2006): Transnational citizens or circulating semi-proletarians? –
A study of migration circulation between Sweden and Asia, Latin America and Africa
between 1968 and 2002. Population, Space and Place, 12:517-527.
Lindgren U &Strömgren M. (2006): Slutförvaret och det lokala näringslivet – En
undersökning om upphandlingsbehov och leverantörskapacitet i Östhammar och Oskarshamn.
1
In: SKB: Samhällsforskning 2006 – Betydelsen för människorna, hembygden och regionen av
ett slutförvar för använt kärnbränsle. Svensk Kärnbränslehantering AB, Stockholm, pp. 4864.
Lindgren U & Elmquist H. (2005): Environmental and Economic Impacts of DecisionMaking at an Arable Farm: An Integrative Modeling Approach. Ambio 2005;34:393-401.
Lindgren U & Strömgren M. (2005): Geografiska effekter av en djupförvarsetablering. In:
SKB: Samhällsforskning 2005 – Betydelsen för människorna, hembygden, och regionen av ett
slutförvar för använt kärnbränsle. Svensk Kärnbränslehantering AB, Stockholm. pp. 42-64.
Eliasson K, Lindgren U & Westerlund O. (2003): Geographical Labour Mobility: Migration
or Commuting? Regional Studies, 37:827-837. (*)
Lindgren U. (2003): Who is the counter-urban mover? – Evidence from the Swedish urban
system. International Journal of Population Geography, 9:399-418. (*)
Öhman M & Lindgren U. (2003): Who is the long-distance commuter? – Patterns and driving
forces in Sweden. CyberGEO – European Journal of Geography 2003;No243, 01/08/2003.
Peer review conference papers
Boschma R, Eriksson R & Lindgren U. (2008): Labour mobility, related variety and the
performance of plants – A Swedish study. Paper presented at DRUIDs 25th Celebration
Conference.
Boschma R, Eriksson R & Lindgren U. (2007): Related Variety and Labour Mobility. Paper
presented at the DIME workshop: Network dynamics and the performance of local innovation
systems. Max Planck Institute of Economics, Jena, Germany, October 25-27.
Lindgren E, Sullivan KPH, Lindgren U & Spelman Miller K. (2003): Text Geography.
Invited presentation at ILO, Amsterdam University, the Netherlands, November 3.
Reports and Working papers
Ivarsson A, de Luna X, Nilsson K, Lindgren U & Bergdahl I. (2010): Registerdata om
barndomen – kunskapsbas för hållbar hälsa och välfärd. SVEPET – Medlemstidning för
svensk Epidemiologisk Forskning, 28:3, pp. 4-6.
Lindgren E, Lindgren U & Pettersson T. (2010): Driving from the centre to the periphery?
The diffusion of private cars in Sweden, 1960-1975. In: Lindgren, E.: Samhällsförändring på
väg – Perspektiv på den svenska bilismens utveckling mellan 1950 och 2007. Umeå Studies in
Economic History No. 40, Umeå University.
Keskitalo C, Nordlund A & Lindgren U. (2009): Grunden för beslut i kärnavfallsfrågan –
Upplevelser av lagstiftningsgrund och MKB-process. SKB – Svensk Kärnbränslehantering
AB, R-09-11.
2
Boschma R, Eriksson R & Lindgren U. (2008): Labour mobility, related variety and the
performance of plants – A Swedish study. Urban and Regional Research Centre Utrecht,
Utrecht University. Papers in Evolutionary Economic Geography 2008;08/09.
Holm E, Lindgren U & Strömgren M. (2008): Socioekonomiska effekter av stora
investeringar i Oskarshamn. SKB – svensk Kärnbränslehantering AB, R-08-76.
Holm E, Lindgren U & Strömgren M. (2007): Socioekonomiska effekter av ett slutförvar i
Östhammar. SKB – Svensk Kärnbränslehantering AB, R-07-53, Stockholm.
Lindgren U & Strömgren M. (2007): Slutförvarets lokala effekter på befolkning och
sysselsättning i Östhammar och Oskarshamn. SKB – Svensk Kärnbränslehantering AB, R07-04, Stockholm.
Helmersson P & Lindgren U. (2007): Fördel Nordanstig – befolkningen, fastighetsmarknaden
och kommunikationerna. Mål 2-projektet Fördel Nordanstig - Nordanstig i gränslandet mellan
två arbetsmarknadsregioner, Nordanstigs kommun, Kulturgeografiska institutionen, Umeå
Universitet, Umeå.
Elmquist H, Lindgren U & Mäkilä K. (2004): Decision-Making and Environmental Impacts –
A dynamic simulation model of a farm business. Report FOOD 21, No 3.
Holm E, Lindgren U & Malmberg G. (2004): Arbete och tillväxt i hela landet – betydelsen av
arbetskraftsmobilisering. ITPS – Institutet för tillväxtpolitiska studier, A2004:22, Östersund.
Lindgren U. (2004): Kontraurbana flyttare i retrospektiv. ITPS – Institutet för
tillväxtpolitiska studier, Arbetsrapport R2004:12, Östersund.
Holm E, Holme K, Strömgren M, Lindgren U, Mäkilä K, Eriksson M & Schrödl D. (2004):
Tid för arbete. ITPS – Institutet för tillväxtpolitiska studier, Arbetsrapport R2004:13,
Östersund.
Holm E, Lindgren U, Eriksson M, Eriksson R, Häggström Lundevaller E, Holme K &
Strömgren M. (2004): Transfereringar och arbete. ITPS – Institutet för tillväxtpolitiska
studier, Arbetsrapport R2004:16, Östersund.
Lindgren U & Westerlund O. (2003): Labour market programmes and geographical mobility:
migration and commuting among programme participants and openly unemployed. IFAU –
Institute for Labour Market Policy Evaluation, Working paper 2003:6, Uppsala.
Lindgren U. (2002): Counter-Urban Migration in the Swedish Urban System. CERUM
Working Paper no 57, Umeå University.
Lindgren U, Eliasson K & Westerlund O. (2002): Flytta eller Pendla? In: Malmberg, G. (ed):
Befolkningen spelar roll. GERUM Kulturgeografi 2002:3, Umeå universitet.
Pettersson Ö, Lindgren U & Jansson B. (2002): Forestry restructuring in northern Sweden. In
Pettersson, Ö.: Socio-Economic Dynamics in Sparse Regional Structures. GERUM
Kulturgeografi 2002:2, Umeå University, Umeå.
3
Kod
2011-36596-89497-29
Name of applicant
Stenbeck, Magnus
Date of birth
510503-1032
Appendix Z
Other
VRAPS/VR-Direct bilaga 2004.Re
Lena Gustafsson
Vice-Chancellor
Phone: 090-786 50 00
E-mail: [email protected]
Datum: 2011-04-08
Dnr: 500-731-11
Stödbrev för ”SIMSAM INFRA - An overarching infrastructure
for the coordination of person identified data for research”
Over the years Umeå University has purposefully expanded its competence and
knowledge within register-based research related to many different disciplines and
faculties. The SIMSAM Infra project will be very useful for the research community
on a national level because it will facilitate a more efficient use of Swedish microdata
on individuals. It has been frequently argued that a deepened understanding of many
socioeconomic and health issues could be attained if existing microdata sources were
better coordinated. The aim of SIMSAM Infra is to develop novel organisational
forms facilitating increased access to microdata on individuals in research.
The proposed project “SIMSAM Infra” is a research infrastructure that is strategically
important for Umeå University as it links to many of our identified strong research
environments.
Umeå University wishes therefore to express its clear-cut support for the application
to the Swedish Research Council entitled SIMSAM Infra.
Lena Gustafsson
Vice-Chancellor
Umeå University
Sid 1 (1)
2011-04-18
1 (1)
Letter of support
Centre of Registers in Region Västra Götaland (RC VGR) wishes to express its support for the
application to the Science Council of Sweden entitled Grant for a joint infrastructure. RC VGR wishes
to contribute to and take part in further development of mainly working package 3 regarding
national quality register research and those activities that will be initiated in this working package.
The purpose of the overall infrastructure is also to coordinate quality registers with other data
sources such as biobanks and official statistics databases, therefore coordination and collaboration
between working packages is needed. RC VGR is a Competence Centre for National Quality Registers
that supports national quality register organisations with i.e. IT services, annual reports, applications,
research support etc, according to the criteria defined by the Swedish Association of Local
Authorities and Regions. The activities that this application proposes could strongly enhance quality
register based research in Sweden.
Thomas Brezicka, MD PhD
Director
Centre of Registers Region Västra Götaland
Postadress:
Registercentrum
413 45 Göteborg
Telefon (vx): 031-693 900
Besöksadress:
Nya Varvet, Byggnad 25 (NHV)
www.registercentrum.se
Kod
2011-36596-89497-29
Name of applicant
Stenbeck, Magnus
Date of birth
510503-1032
Appendix ÖA
Operation grant
VRAPS/VR-Direct bilaga 2004.Re
Appendix ÖA
SIMSAM INFRA
General
The research community has a need to be able to create and maintain general purpose
databases and registers or data logs of person-related information, which may be stored and
used beyond the context of a particular research project. The latest Government Research
Proposition states that Sweden is uniquely positioned, through the combination of its
registries which cover the entire population and the general purpose personal identity number
system that uniquely identifies every Swedish resident, to study pressing interdisciplinary
questions regarding the connection between social and societal conditions, economy and
health. These conditions are viewed to be so unique that Sweden is well positioned to be
world-leading in this category of research. The problem according to the Proposition is that
the population data register repositories are currently under exploited and the coordination of
infrastructure and databases is limited. This has also been expressed by the Swedish Research
Council, which has pointed out that the cause is multifaceted: that the national data
repositories are spread over a large number of actors, that researchers have not realized the
registries’ potential, and that a critical mass of people with the necessary competence is
lacking, among other things. The Proposition establishes that better use of the data
repositories is important—not only for research, but also for the successful and knowledgebased development of pertinent government agencies within the public health and medical
system. The Proposition also states that laws and other regulations for the common utilization
of register data and other data might have to be examined and adapted to suit new
organizational and technical conditions.
Researchers in Sweden and the Nordic countries have good international reputation in many
research areas, not least in welfare, health and medicine. The Nordic countries are, however,
in the same competitive situation as most other countries except for in one area: register-based
research in health and welfare. Well developed population and health data registers covering
the whole population have been in operation since decades. The use of personal identification
numbers make it possible to link data from different sources. For example, health data
registers can be linked to data from biobanks and other sources like quality registers. All this
is an important advantage for longitudinal research which is well illustrated by bibliometrical
data. A broad analysis for the year 2002 shows that the Nordic countries already have a
production of scientific peer-reviewed articles in epidemiology that are 2.2-2.8 times higher
per inhabitant than in other countries strong in epidemiology like United Kingdom, USA and
the Netherlands. This strong position has also opened up for collaboration with many
researchers abroad and have attracted substantial research funds from especially the USA and
Europe (EU). In spite of these impressive figures, we have not used the full potentials of these
advantages. If we did, the edge provided by our data resources would enhance the
productivity of Swedish medical and social research even more.
A number of new initiatives have been taken recently for facilitating access to personal data
for research purposes in Sweden, and corresponding initiatives exist in the neighboring
countries. In the European context, coordination of biobanks is of prime importance, and there
are also initiatives for coordinating data in the social sciences, as well as collecting data in
European-wide surveys (e.g. European Social Survey, Survey of Income and Living
Conditions, European Health interview Survey, Survey of Health and Ageing). There is,
however, not a corresponding system of comprehensive population wide personal data
information like the ones in the Nordic population registries, especially not with person
identifiers that can be used across different sectors to link data for research purposes. In the
current situation when several national initiatives are under way in the areas of biobanking
and enhancement of treatment data coordination, an overall coordination umbrella for
research would be more needed and be more productive than ever before.
As seen by the list of co-applicants, the infrastructure is supported both by the medical and
social science community across Sweden - its backing is the nation-wide network for registry
based research SIMSAM, and it is supported by large networks within medicine. Its purpose
is to develop a highly decentralized structure where independent participants join a common
program for setting up organizational, ethical and technical principles for collaboration.
The infrastructure will under its heading take care of research coordination within a couple of
important areas where action is particularly important: common systems for central authority
registries with health and demographic/social data, and a coordination structure for the
research use of national health care quality registries. Coordination in both areas will be
organized without further centralization of data, but will require joint efforts to adapt to
compatible systems for data sharing and data protection.
In other fields, it is the possibility of linking data to other data types that is of prime
importance. For instance, the possibility of increasing the use of biobank information by
facilitating the links to other data is an important feature of the proposed structure. This
possibility is unique for Sweden, and promises to create a great competitive advantage for
research on biobank material tied to vital data and health outcomes. It is also very important
to be able to link other research generated data than biological samples to information from
the comprehensive registries, thereby increasing the potential for cohort based and
longitudinal panel studies in general.
The infrastructure will engage experts in new database technology and make use of the
excellent resources of the Swedish National Infrastructure for Computing (SNIC) and the
Swedish University Net /(SUNET) for fast and secure data transfer. The possibilites of new
technology like federated databases and cloud technology will be explored as solutions for
secure and decentralized data sharing. Modern IT structure will also be used to support certain
parts of the legal processing with the purpose of enhancing security and data protection.
There is increasing concern in the community about the rights of the individual concerning
data protection. The availability of comprehensive data holdings call for an increased
awareness in the research community about these issues. Reviews of international and
Swedish legislation is in progress. The proposed SIMSAM INFRA infrastructure calls for a
coordination of data handling that will improve the possibilities for linkages, but at the same
time it calls for a tighter control of data protection by enhanced ethical analysis and by
building legal informatics systems to guarantee appropriate handling of research data as well
as basic registry and biobank data and their combination.
The -basic task of this infrastructurein this context is to support researchers so that they can
design projects taking legal and ethical aspects into consideration with the hypothesis that
increased collaboration between authorities, register organizations, researchers and ethical
review boards should result in increased use of data as well as increased protection of
personal integrity of those registered, e.g. patients. This general task will be carried out with
the help of the following ten specifications:
1. Overview and evaluation of Swedish rules – legislations, regulations and instructions
– of relevance for the establishment, access to and use of data and infrastructures for
research.
2. Evaluation of the implications of this work from a European and international
perspective, taking into account the conditions for legislative procedures and
rulemaking in a Europeanized and globalized legal order.
3. Overview and evaluation of the work in Swedish and international ethical committees
that have bearing on data infrastructures.
4. Overview and evaluation of how different rules, legally binding as well as soft law,
have conceptualized and balanced different ethical interest, such as integrity, privacy,
freedom of speech, human rights, individual and public interests at both the Swedish,
European and international level.
5. Proposal of principles for data ownership and sharing policies.
6. Creation of a map of the legal and ethical system for person identifiable data and a list
attaining a strong protection of integrity.
7. Proposal of a stepwise program for the implementation of this map in practice.
8. Follow and bring added value to parallel work initiated by other agencies including
future government investigations.
9. Develop suggestions for an administrative infrastructure for the coordination of the
handling of legal and ethical issues across data owners under the current legislative
system, e.g. common offices for taking care of applications.
10. Providingethical and legal advice to register researchers and register organizations.
Critical factors for success
The infrastructure aims at creating a “collaboration umbrella” to facilitate the access and use
of personal data in research. There are a few critical factors that will determine the degree of
success that will be accomplished:
1. Negotiations about the organizational structure. We have a very strong support
backing up the application from stakeholders. Several steps however remain to be
taken:
a. Central authorities need to launch a project to build a common e-Infrastructure
for the research community. The involved authorities include not only
Statistics Sweden and The National Board of Health and Welfare, but also
several other important “statistical agencies” (agencies that are commissioned
to produce official statistics) and other authorities. SIMSAM INFRA and then
authorities also need to follow and adapt to possible changes in the system of
official statistics proposed by the government investigator Bengt Westerberg
in the end of 2012.
b. Regional authorities and professional groups have shown an interest in
working with SIMSAM INFRA (see letters of support) towards creating a
collaborative structure for increased research of data from the health care
quality registers. This is a major effort involving the coordination of 85
national registries (see enclosed list at the end of Attachment ÖA), and the
number is growing. The research infrastructure package is part of a broad
effort to improve the structure, currently driven by the Swedish government as
proposed in the report “Guldgruvan i hälso och sjukvården”. In that report, a
strengthened organization for collaboration is proposed. SIMSA INFRA needs
to become a part of and collaborate with this structure, representing the
research interest in this context.
2. The legal system needs to be adapted to modern infrastructure
a. there are indications that a review of the legislation and its interpretation is
under way in the Swedish government, triggered by an initiative by the
Swedish Research Council (VR report 2010:11)
b. a legal informatics system that can handle legal issues efficiently needs to be
developed and implemented among the data users
3. Technological changes need to be developed fast enough to be able to take on the task
of coordination of distributed data sources in practice. There is god reason to believe
that this can be accomplished within the strong infrastructures in place in SNIC and
SUNET and the development work that has been done within CODIR, BIMS, and
other database management and data sharing projects. A critical factor here is the
construction of data security that meets the standards of the legislation, something
which will be part of WP6.
4. A common portal for researcher support that becomes known and used by the
researcher community within social science as well as medicine needs to be set up
quickly and serve as a platform for communication between researchers and data
providers. This is the task of WP9. The experience of SND in collaboration with the
register authorities, and the newly established link to the quality register organization
will help to make this a success.
Organizational structure
As described in the research plan, the infrastructure is organized into 10 work packages, four
of which describe the type of data environment to include and five of which describe common
functions to be developed. In general, the infrastructure is built on a decentralized structure,
where as much governance as possible is kept locally or regionally, but where participants
agree on common rules and systems of cooperation and coordination. The governance
structure of SIMSAM INFRA is described schematically in Figure 1.
Fig 1 Governance and management
The overall governance of the structure is handled by two groups, a board of directors and a
Research Data Board. The WP1 office is tied to the Board of Directors.
The Board of Directors
This board consists of the coapplicants of the structure. It is chaired by the main applicant
university, Karolinska Institute, and includes representatives of
1. The six co-applicant universities (Stockholm University, Umeå University. Lund
University, Uppsala University, Gothenburg University, and Linköping University)
2. Representation from the health quality registries network
3. Representation from the central government authorities
The Research Data Board
This Research Data Board should be constituted as an independent advisory body serving as a
strategic high level reference committee that represents the big data owner and user interests
in Sweden.
1. It should be chaired by the Swedish Research Council or, alternatively, by a
representative of the Ministry of Education
2. It should have as its permanent members high level representatives of the Swedish
Research Council, The Swedish Association of Local Authorities and Regions,
Statistics Sweden, and The National Board of Health and Welfare. In addition, it
should include permanent representation from the governing board being planned for
the health care quality registries (see “Guldgruvan i hälso och sjukvården, page 241)
3. It should be able to include other organizations and authorities on a rotating schedule,
or based on the current needs for competence.
4. It should also be able to include representatives of the public interest and independent
experts in the field.
The general role of the Research Data Board should be to promote the research use of official
Swedish data and registries, including data produced by the universities. It should not have
SIMSAM INFRA as its only concern but have a more general agenda. Its role visavis the
infrastructure should to provide strategic advice to the Board of Directors.
WP Management Committees
WP 2-10 should have one management committee each. The main representation for WP 2 –
5 should consist of all the major data interests/owners within the group, and representatives
for the coordinating functions in WP 6 - 10. WP 6-10 should include experts from other WPs.
Each WP committee should be chaired by the WP leader. These groups should meet on a
frequent basis to produce actual development and implementation plans for each package.
WP1 should be represented in each of the WP Management Committees.
The WP Management Committees may decide to organize further structures under its
heading. It is anticipated that the need for this will vary greatly across the work packages.
Deliverables and budgets of the work packages
The needs for coordination and negotiations varies greatly between the work packages. By far
the most complicated structure to coordinate will be the WP3 coordination of a large number
of health care quality registries. It is anticipated that substantial negotiations will have to be
performed with stakeholders at individual registries along with coordinating functions in
regional and central competence centers. Also the coordination of central authority data will
take some time to negotiate. Hence, data delivery and handling services in these two packages
are planned to start as from 2013.
Below are lists of deliverables pertaining to each work package. Explanatory background
goals relevant to these deliverables are described in Attachment A. To facilitate comparison
of deliverables and budget, the WP specific budgets are presented after the table of
deliverables.
WP1 Management and coordination
2012
2013
2014
2015
2016
July 1. Establishment of board of directors. Recruitment of personnel.
Dec 31. Establishment of the Research Data Board and WP committees. Launching
of web page for the project completed.
Participation and monitoring of development work.
Participation in meetings.
Participation in meetings. Planning of future financing.
Participation in meetings. Planning of future financing. Planning conversion from
development work to operations.
Participation in meetings. Monitoring operations. Final preparations for continued
operations. Possible closing of the infrastructure for development work.
WP1 Budget
2012
2013
2014
2015
2016
SUM
Senior
Project
executive
cocoWeb
ordinator ordinator adm
Meetings Travel Administration Localities SUM
1052
160
137
200
150
322
516
2538
1052
320
500
400
300
339
542
3453
1052
320
500
400
300
339
542
3453
1052
320
500
400
300
339
542
3453
1052
320
500
400
300
339
542
3454
5261
1441
2137
1800 1350
1072
2684
15746
WP2 central authorities
2012
2013
July 1. Negotiated agreement and cost sharing with authorities. Start data warehouse
development at NBHW. Start exploring of safe online access in NBHW. Negotiate
collaboration on legal issues.
Dec 31. SUNET solution for authorities finalized. Work group with other authorities
started. Inventory of available metadata systems in central authorities completed.
July 1. Proposal for a secure remote access system presented. Common
documentation approach established and negotiated.
Dec 31. Agreement on a national node data storage/retrieval of researcher data.
Trials with remote access at NBHW during the fall. Proposal for a common legal
informatics system.
2014
2015
2016
Jan 1. Delivery via SUNET to national node of manually produced datasets started.
Implementation of a common legal informatics system.
July 1. Evaluation of remote access solutions for joining authority data via net based
solutions.
Implementation of remote access system. Documentation translation bridge across
SCB and NBHW working online.
Operation of a common system. Evaluation and continued database development.
WP2 budget
Year Coordination
Operation
SOS
Metadata
operation
remote
Database
Database
researcher
SCB
access development development
interface
MONA
system
SOS
SCB development
Excluding
SCB
SUM MONA:
2012
2013
2014
2015
2016
450
450
500
500
500
11000
11500
12000
12000
12000
0
500
1500
3000
3500
1500
1300
1000
1000
900
1200
1200
1100
1000
900
600
400
400
300
300
14750
15350
16500
17800
18100
SUM
2400
58500
8500
5700
5400
1400
82500
Note: The operation of MONA is already a regular part of the RFI budget.
WP3 Health Care Quality Registries
2012
2013
2014
2015
2016
Jan 1. A representative group of researchers, quality register holders and quality
register centres should be established to produce a detailed plan for a joint
infrastructure.
Dec 31. Presentation of development plan. The plans for 2013 and onwards are
tentative and may be modified by this plan. Cost sharing principles between research
and other applications are decided.
Jan 1. Start of development of standard procedures for cross linking data from
different quality registers and health care registers.
Dec 31. Launch of a meta data portal i.e. information about what kind of registers
there are and their contents.
July 1. Development of standard procedures for cross linking data from different
quality registers and health care registers completed. Start of support for resources
for standardization of national quality register database structures in joint projects
between register organisations and relevant competences shared on a national level
started.
Ongoing support work for standardization and accessibility
Ongoing support work for standardization and accessibility
3750
3850
4500
5800
6100
24000
WP3 Budget
2012
2013
2014
2015
2016
sum
Database
competence/researcher The
Standardizing
The hub Planning support
Portal
data
SUM
0
140
0
0
0
750
70
1575
1000
0
1500
3150
1500
0
1500
3150
800
0
1500
3150
600
0
5250
11025
3900
0
140
3395
6150
5450
5250
20385
WP4 Researcher generated data
2012
2013
2014
201516
Jan 1. In collaboration with WP7 continue work to find existing important datasets.
This work is a continuation of regular work in SND, but this WP focuses on person
identified data holdings.
July 1. A WP4 steering group has been established.
Dec 31. Present a basic list of data holdings. A Wp4 reference group of active
researchers has been established.
Dec 31. Present a decentralized strategy to handle, store and make researcher data
holdings easily available for analysis on a national scale, adapted to technology
developed in WP6 and adapted to the needs of researchers as data owners. Provide
recommendations for similar/compatible database technology. Present an
information and communication plan for researchers.
Dec 31. In collaboration with WP8, present a report on the archiving of personal
data with person identifiers. Provide content for information services online and by
course materials.
Continued information and development
WP4 Budget
2012
2013
2014
2015
2016
Sum
Personnell Administration Localities Licenses Travels
SUM
1300
130
208
20
70
1728
1989
199
318
20
70
2596
2029
203
325
20
70
2647
2069
207
331
20
70
2697
2111
211
338
20
70
2750
9498
950
1520
100
350
12417
Note: Personnel includes 1 FTE coordination, 0,5 FTE database management and 0,5 FTE
documentation
WP 5 Biobanks
2013
2013
2014
2015
2016
Jan 1. Start work on negotiating solutions for a decentralized production of a study
database. Participate in the development of data formats/standards for data
transfer/compatibility
July 1. Wp5 steering group is established.
July 1. Education (at relevant basic high school/university educations as well as at
research level) to improve researcher knowledge about the availability and
usefulness of these data in research, for instance by widening the scope of SINGS,
the SIMSAM research school for registry based research
Dec 31. Deliver infrastructure that can provide an organized registry linkage service
for defining a study base with stored biospecimens and the exposure and health
outcome data. Present recommendations for standards for data
transfer/compatibility.
Education continued
Dec 31. Publish book in Swedish: ”Forskning där data från personregister och prover
från biobanker nyttjas”
Education continued
Dec 31. Publish a book in English: “An Introduction to Research in Registries and
Biobanks in Sweden”
Education continued. Evaluation.
WP5 Budget
2012
2013
2014
2015
2016
SUM
Salary WP Salary DB
Data
coordinator managers Education Meeting Travels linkage SUM
700
650
100
75
50
50
1625
700
1300
400
150
100
150
2800
700
1300
400
150
100
150
2800
700
1300
400
150
100
150
2800
700
1300
400
150
100
150
2800
3500
5850
1700
675
450
650
12825
WP6 Databases and computing
Deliverables
2012 Recruitment of basic WP personnel finished. Negotiations and overall planning with
01/07 data owners of the work packages 2 -5 completed. Planning of continued
development of CODIR completed.
2012 Setup of technical test platforms at NSC completed. Detailed planning of
31/12 development projects at SCB and SoS, including specification of resources and
agreements on cost sharing principles.
2013 Complete detailed planning of WP3, WP4, and WP5, including additional needs for
01/07 resources and cost sharing between stakeholders, Set up a test for Cloud computing.
Recruit resources for development and implementation of new database solutions in
Socialstyrelsen. Proposed security solution for WP2 completed, including legal
review.
2013
31/12
2014
Security solutions negotiated with all parties. Test platforms for WP3 and WP5
running.
Test remote systems for access within WP2, WP3, and WP5. Develop proposed
solutions for WP 4. Evaluate the Cloud and its implications for the future setup of the
federated database solution.
2015
Test manual and remote systems for combing data across WPs. Implement solutions
for WP2 that are taken into regular operation. Implementing parts of a WP3 system in
regular operation.
Regular operation of data sharing systems for WP2, 3, and 5.Implementation of
remote access systems for WP4. Inventory of future needs. Evaluation.
2016
WP6 Budget
2012
2013
2014
2015
2016
Sum
(tSEK)
Hardwar SUM per
Applicatio
Security
WP
year
e (see
coordinato specialis Programme System n
(tSEK)
t
r
s adm specialists Travels note)
r
915
412
366
183
366
100
900
3242
915
824
732
366
1098
100
900
4935
915
824
732
366
1098
100
900
4935
915
824
732
366
1098
100
900
4935
915
824
732
366
1098
100
900
4935
4575
3706
3294
1647
4758
500
4500
22980
Note: hardware consists of 8 analysis nodes (64--128 GB RAM) and disk storage 250 TB net
WP7 Documentation
2012
2013
2014
2015
2016
July 1. A documentation committee has been formed
Dec 31. Deliver an information database of all data held by central government
authorities. Deliver an information database on all data kept by regional health care
authorities that have been classified as national resources.
Dec 31. Deliver an information database on the major data holdings in the Nordic
countries with the fields of social science and epidemiology/health sciences. Present
a a first version of translation tables for documentation systems within WP 2.
Define minimum core datasets with common systems for documentation across
applications for Wp3,
Dec 31. Deliver an information database on biological data, including the BBMRI
system, but also a comprehensive list of smaller local biobanks that are not part of
the coordinated structure. Present a second version of translation tables for
documentation systems within WP 2 and 3. Define minimum core datasets with
common systems for documentation across applications for Wp4.
Dec 31. Present a third version of technical tools and translation tables for
documentation systems within WP 2, 3, 4 and 5
Support for further development of WP 9 services with respect to documentation.
Evaluation..
WP7 Budget
2012
2013
2014
2015
2016
Sum
Personnell Administration Localities Travels
SUM
366
37
59
50
511
747
75
120
50
991
762
76
122
50
1010
777
78
124
50
1029
792
79
127
50
1048
3444
344
551
250
4589
WP8 Legal and ethical issues
2012
2013
2014
2015
2016
Dec 31. Present additional overview and evaluation of Swedish and European rules
as a complementary addition and update of work in VR report 2010:11 “Rättsliga
förutsättningar för en databasinfrastruktur för forskning”. Follow and bring added
value to future government investigations.
July 1. Present a report: Overview and evaluation of the work in Swedish and
international ethical committees that have bearing on data infrastructures. Propose a
design for a legal informatics system
Dec 31. Present a report on how different rules, legally binding as well as soft law,
have conceptualized and balanced different ethical interest, such as integrity,
privacy, freedom of speech, human rights, individual and public interests at both the
Swedish, European and international level. Present results of negotiating the legal
informatics system with important data owners. Proposal of principles for data
ownership and sharing policies.
Present a map of the legal and ethical system for person identifiable data and a list
attaining a strong protection of integrity
Proposal of a stepwise program for the implementation of this map in practice.
Implementation of informatics solutions for WP2.
Implementation of informatics solutions for WP3.
Providing support and ethical and legal advice to register researchers and register
organizations. Implementation of informatics soultions for Wp4.
Senior
ethicist
2012
2013
2014
2015
2016
SUM
458
915
915
915
915
4118
Lawyer
Adm cost Meeting
Travels
SUM
572
100
50
100
1279
1144
100
100
100
2359
1144
100
100
100
2359
1144
100
100
100
2359
1144
100
100
100
2359
5147
500
450
500
10714
WP9 Researcher support
2012
2013
2014
2015
2016
July 1. A research support committee has been formed.
Dec 31. Online access to a list of relevant registries and populations in central
authorities and quality registries produced by WP7 in collaboration with Wp2-5
stakeholders A national portal has opened that can put prospective users in contact
with data owners in the authorities or other dataowners. Planning/initiastion of user
groups
User groups are created at the web portal for several data and data types.
July 1. The system provides guidance and services with respect to the technical use
of the common data server with respect to data management and analysis
Dec 31. Providing a portal to legal guidance and services to researchers with respect
to applications for data access developed by WP8.
July 1. Online courses on legal and technical data management issues are offered,
based on material from the SIMSAM research school and other contexts
Dec 31. Setting up a national focal point handling international/Nordic data
collaboration developed by WP10..
Operative services expanding to more WP3 and WP4 data
Operative services expanding to more WP3 and WP4 data
Wp 9 Budget
2012
2013
2014
2015
2016
SUM
WP
Web
Support
coordinator adm
personnel Education Travels
SUM
229
160
320
0
50
458
160
641
200
100
458
160
641
200
100
458
160
641
200
100
458
160
641
200
100
2059
801
2882
800
450
759
1558
1558
1558
1558
6992
WP10 Nordic collaboration
2012
201316
2014
2015
2016
July 1. Planning of continued work based on report to NordForsk
Setup of a Nordic system of national nodes for exchange of data within the health
sciences is created.
Jan 1. A list of Nordic data holding in the health sciences is presented
Jan 1. A list of Nordic data holdings in the social sciences is presented
A Nordic system of national nodes for data exchange across social and medical
sciences is in operation.
WP 10 Budget
2012
2013
2014
2015
2016
Sum
(tSEK)
Postdoc
Travels
160
100
320
200
320
200
320
200
320
200
1441
900
SUM per
year
(tSEK)
260
520
520
520
520
2341
Overall budget SIMSA INFRA in KKR
Wp1
Wp2
Wp3
Wp4
Wp5
Wp6
Wp7
Wp8
Wp9
Wp10
Sum(year)
2012
2538
14750
140
1728
1625
3495
511
1279
766
262
27094
2013
3453
15350
3395
2596
2800
5066
991
2359
1571
523
38103
2014
3453
16500
6150
2646
2800
5066
1010
2359
1571
523
42078
2015
3453
17800
5450
2697
2800
5066
1029
2359
1571
523
42748
2016
3454
18100
5250
2750
2800
5066
1048
2359
1571
523
42919
Excl MONA
Sum
16350
82500
20385
12417
12825
23757
4589
10714
7048
2355
192942
134442
Comment: The budget includes only costs which are not part of other infrastructures, and
contains coverage of some costs that are being covered currently, but is here organized into an
organizational structure. A joint effort of this kind and size promises to make savings possible
in the long run. The cost sharing principles between research infrastructure funds and other
financing of authority costs is a matter of negotiations. No costs for services that currently are
taken up as the primary tasks of authorities are included. Changes in the allocation of
resources to authorities for research support may occur and will affect this budget (e.g. direct
financing of remote access systems for research via the national Swedish budget, or future
changes in the distribution of data holdings across authorities).
Kod
Dnr
2011-36596-89497-29
2011 -
Name of applicant
Stenbeck, Magnus
Date of birth
Reg date
510503-1032
2011-04-19 23:30:37
Project title
KFI
Research grant RFI 19 april 2011
RFI-5, RFI-4
2012
27095
Appendix S
Large-scale research infrastructures
*Infrastruktur medicin
2013
38103
2014
42078
Applicant
Head of department at host University
2015
42748
Signatures
2016
2012-01-01 -- 2016-12-31
42919
Date
Clarifi cation of signature
Telephone
A signature on the application is required not only from the applicant but also from the authorised representative of the host
university/institution or equivalent (normally the head of the department or establishment where the research is to be conducted). The
signature confirms that the department can accommodate the proposed research, position or equipment; that the costing in the application is
approved for the department's part, that any proposed experimentation on human or animal subjects has been reported, and that the
applicant has reported any secondary occupations and commercial ties (s)he may have, and nothing inconsistent with good research
practice has thereby emerged. The applicant must have discussed these conditions with the representative of the host university/institution
or equivalent before the latter approves and signs the application.
International Postdoctoral Fellowships are administered by the Swedish Research Council. The only signature required on the application is
that of the applicant.
Vetenskapsrådets noteringar
Kod
2011-36596-89497-29
VRAPS/VR-Direct b 2

2011 Large-scale research infrastructures

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