Arthritis Foundation Scientific Strategy

Transcription

SCIENCE
Scientific Strategy 2015-2020
Science has
ARTHRITIS
on the Run...
— Walter G. Barr, MD
Science has
ARTHRITIS
on the Run...
— Walter G. Barr, MD
www.arthritis.org
2
“Science has Arthritis on the Run...”
Amanda Niskar, DrPH, MPH, BSN, National Scientific Director
1330 West Peachtree Street NW, Suite 100, Atlanta, GA 30309
Arthritis Foundation Scientific Strategy 2015-2020
3
SCIENCE
4
TABLE OF
CONTENTS
6
8
12
16
22
Arthritis and
Related Diseases
in the U.S.
Population
Scientific
Discovery
Pillar 1:
Delivering on
Discovery
Pillar 2:
Decision Making
With Metrics
Pillar 3:
Building Human
Capital
26
33
Goals and
Targets
References
35
42
51
54
56
Appendix 1:
Alignment with
Arthritis and
Related Disease
Organizations
Appendix 2:
Learning from
Complementary
Approaches
Appendix 3:
Research
Advisory
Committee
Appendix 4:
Research
and Strategic
Planning
Task Team
Appendix 5:
Acknowledgments
ARTHRITIS
one
in five
U.S.
adults
More than
report doctor-diagnosed
arthritis.
6
Arthritis & Related
S
tatistics show that arthritis and related
diseases probably affect every family
in the United States. Approximately 22
percent of U.S. adults (more than 50
million people) aged 18 years or older self-report
doctor-diagnosed arthritis.1 In the United States,
osteoarthritis affects 14 percent of adults aged
25 years and older and 34 percent (12.4 million)
of those 65 years and older.2 It is estimated
that 1.5 million U.S. adults have rheumatoid
arthritis and 3.0 million U.S. adults are living with
gout.3 Prevalence estimates for systemic lupus
erythematosus range as high as 1.5 million.2
An estimated 294,000 U.S. children under age
18 (or one in 250 children) are diagnosed with
arthritis or another rheumatologic condition.4
Arthritis kills people of all ages as the primary and
associated cause of death. In addition, complications from treatment of arthritis can result in death.
During the 20-year period of 1979-1998, 146,377
deaths were recorded with an underlying cause of
arthritis and other rheumatic conditions.5 Deaths
occurred among all age groups, including children;
12 percent of deaths occurred among persons
aged 15–44.5 Age-standardized death rates were
higher for women and blacks.5 Among rheumatic
conditions, systemic lupus erythematosus has a
relatively high mortality (15 percent of all rheumatic disease mortality in 1997).6 Using 10 categories of arthritis and other rheumatic conditions,
three categories accounted for almost 80 percent
of deaths: diffuse connective tissues diseases
(34 percent; mostly systemic lupus erythematosus and systemic sclerosis), other specified
Diseases in the U.S. Population
rheumatic conditions (23 percent, mostly vasculitis), and rheumatoid arthritis (22 percent).5 During
the 20-year period, an additional 585,446 people
had arthritis and other rheumatic conditions listed
as an associated cause of death.5 These estimates
may not capture mortality from treatment-related
adverse effects, such as nonsteroidal anti-inflammatory drug induced gastrointestinal bleeds.5
Forty-eight million U.S. adults (22 percent) report
a disability.7 Arthritis or rheumatism is the most
common cause of disability, while back or spine
problems and heart trouble are among the top
three causes.7 Among adults reporting a disability, the most commonly identified limitations were
difficulty climbing a flight of stairs (22 million,
10 percent) and walking three city blocks
(23 million, 10 percent).7 One in 10 adults has
trouble walking a distance equal to walking from
the parking lot to the back of a large store or
through a mall.7 Functional limitations in common
daily activities are common among adults with
arthritis; 43 percent report it is “very difficult” or
they “cannot do” at least one of nine important
daily functional activities.8 Fourteen million adults
reporting an activity limitation due to their arthritis
report limitation in their ability to stoop, bend or
kneel, and 11 million cannot walk one quarter of a
mile.8 In every state at least two in five adults with
arthritis reports arthritis-attributable activity limitations.8 In some states, more than one in two adults
report arthritis-attributable activity limitations.8 The
prevalence of arthritis-attributable social participation restriction ranges from at least one in 40
to about one in 11 adults across states, with a
median of one in 20 (5 percent).8
The facts presented here are serious, and finding
a cure for arthritis and related diseases is, and
always will be, a priority for the Arthritis Foundation. We believe that science is advancing every
day, and the optimism and energy we pour into
scientific discovery are helping pave the way
toward scientific progress. From pharmaceuticals
to holistic practices, small steps to large breakthroughs, we’re always finding ways to improve
your quality of life.
An estimated
294,000
U.S. children
under age 18 (or one in
250 children) are diagnosed
with arthritis or another
rheumatologic condition.
7
DISCOVER
We are collaborating
with other organizations and
building
upon the
legacy
of existing
research
for arthritis and
related diseases.
8
Scientific Discovery
T
he wise words of Walter Barr,9
“science has arthritis on the run,”
inspire research for arthritis and
related diseases. Scientific research
and development holds the key to finding better
diagnostics and treatments—and one day a cure—
for more than 50 million Americans who face the
daily challenges of arthritis and related diseases.10
For almost 70 years, the Arthritis Foundation has
initiated and supported scientific discoveries that
improve the lives of people with arthritis and related
diseases. The Arthritis Foundation continues to
lead the way in advancing scientific discoveries and
seeking solutions that will positively impact the lives
of those who suffer. Our commitment to finding a
cure is unwavering.
For the purposes of this scientific strategy, scientific discovery includes a continuum of scientific
research and development (Figure 1). Each stage
of scientific research and development can influence the other stages. Each scientific discovery
stage is informed by people with arthritis and
related diseases. People with arthritis benefit from
each stage in the continuum.
To illustrate the continuum of scientific discovery,
consider the following examples. The discoveries
that made magnetic resonance imaging (MRI)
possible were initiated in the basic laboratory. With the help of interdisciplinary experts, the
MRI continued to move through the process of
scientific discovery. The noninvasive MRI uses
magnetic and radio frequency energy to reveal new
information about the chemistry of the living body
and the status of tissues and organs buried deep
inside the human body.11 This information from
the MRI can help people with arthritis by revealing
the health status of bones, cartilage, tendons and
ligaments. Another instance of scientific discovery is the knowledge made available by genomics,
proteomics, imaging and other technologies. The
National Institutes of Health (NIH) is leading an
effort called Big Data to Knowledge (BD2K) to
transform mind-boggling quantities of data into
knowledge to accelerate real-world applications of
scientific findings to improve human health.12 The
results of these analytics are providing scientists
with information to choose the correct biological
targets so that a therapeutic product will work
against the disease it is intended to treat.12
For our scientific strategic planning process,
the Arthritis Foundation synthesized the results
of interviews with a wide range of experts and
constituents, including people with arthritis and
related diseases, findings documented in scientific
literature and lessons learned from relevant strategic plans and approaches. In addition, we issued
a request for letters of interest open to everyone everywhere to submit their scientific ideas
to inform the development of this strategy. We
are collaborating with the efforts of other organizations and building upon the legacy of existing
research for arthritis and related diseases. Please
refer to the appendices for more information about
the people and organizations who contributed to
our scientific strategic planning process. This
scientific strategy includes three interconnected
scientific pillars: delivering on discovery, decision
making with metrics and building human capital.
For this strategy, arthritis refers to more than 100
types of arthritis and related diseases across the
lifespan. Together, we can have “arthritis on the
run” by accelerating the movement of scientific
knowledge to a faster cure.13
Scientific Strategy Goals
The scientific strategy is the direction the Arthritis Foundation Science Department is going
over the next five years. The scientific strategy has three pillars. The goal for each pillar is the
impact of the inputs and outputs for each pillar (see Figures 2-4).
P

illar #1: Delivering on Discovery
Improved decision making and better lives through improved prevention, earlier
diagnosis and new treatments to prevent, control and cure arthritis and related diseases
Pillar #2: Decision Making With Metrics
Fact-based metrics for decision making and guiding actions to improve the health of
people across the lifespan with arthritis and related diseases
Pillar #3: Building Human Capital
Scientific research pipeline is strengthened and scientific discovery is catalyzed and
accelerated for arthritis and related diseases
9
through leadership in the prevention, control and
cure of arthritis
and related diseases.
Figure 1 | Scientific Discovery
The knowledge we learn at each stage in the continuum of scientific research and development can fuel
further efforts to meet the needs of people with arthritis and related diseases.
Basic
Science
Points
of Care/
Decision
Making
Scientific
Discovery
Continuum
Systematic
Reviews/
Synthesis
10
Clinical
Studies
Population
Health
Surveillance
& Studies
progressing
Scientific and technological advances are
at an increasingly rapid rate, making it possible
to speed up the process for
finding
a cure.
of the Arthritis Foundation is to improve lives
PILLARS
The mission
11
Scientific Pillar |
1
SCIENTIFIC PILLAR | 1
Delivering on Discovery
12
T
he Delivering on Discovery pillar
(Figure 2) is the focus of the scientific
strategy. In the past, it took an average
of 17 years for only 14 percent of new
scientific discoveries to be available to the people in
need.13 Scientific and technological advances are
progressing at an increasingly rapid rate, making it
possible to speed up the process for finding a cure.15
To accelerate our progress toward finding a cure, we
are building and strengthening interdisciplinary teams
to facilitate scientific research and development
for every stage of scientific discovery.15 A key to
delivering on discovery is that each team — no matter
the stage of scientific discovery — has a plan for
translation of scientific knowledge into the products
people need to prevent, control and cure arthritis and
related diseases. Each discovery team is taking a
systematic approach to gather scientific information
and produce one or more deliverables to find a
cure. The discovery teams are required to measure
metrics that matter to be accountable and effective
while strengthening our mission-driven culture and
maximizing return on philanthropic investment.15,16
This approach to scientific discovery reinforces that
scientific funding from the Arthritis Foundation is an
investment, not a gift.15
The Arthritis Foundation is well positioned to
understand and engage people with arthritis in
the scientific discovery continuum. Whether we
are facilitating better evidence-based decision
making regarding complementary and alternative
medicine use17 or providing leadership in the development of new diagnostics and western treatment
approaches, collaboration and cooperation with other
organizations and experts are helping us navigate
the realities of human biology and troubleshoot the
complexities of clinical research and practice, as
well as the many other challenges that occur on the
scientific discovery continuum.15
An example of how the Arthritis Foundation is
delivering on discovery includes our collaboration
with the private and public sectors in the Biomarkers Consortium.18 In this consortium, the Arthritis Foundation is a partner in accelerating the
development of biomarker-based technologies,
medicines and therapies for the prevention, early
detection, diagnosis and treatment of disease.19
Biomarker-based technologies can define disease
remission and indicate timing for medication
dosage to maintain disease remission. Specifically,
with the scientific leadership of the Osteoarthritis Research Society International (OARSI) and
management by the Foundation for the National
Institutes of Health (FNIH), the Arthritis Foundation provides support for an ongoing large study
to test and select biomarkers (tests of blood, urine,
x-rays and MRI) to improve the ability to test drugs
in clinical studies and, ultimately, improve life for
people living with osteoarthritis of the knee or
who are at risk of developing the disease.18 This
project makes use of the National Institutes of
Health Osteoarthritis Initiative (OAI), a public-domain repository of medical images, patient data
and bio-samples.20,21
Another exciting opportunity to delivery on discovery
is the Accelerating Medicines Partnership (AMP).
The Arthritis Foundation is a founding member of
13
Scientific Pillar | 1
Delivery on Discovery: Objectives
Develop a virtual rolodex of subject matter experts across the scientific discovery
01 
14
continuum who can be invited to provide expertise when needed to achieve a
specific scientific task within a defined period of time
Issue requests for letters of interest and requests for proposals that require the
02 
candidates to:
a. P
lan for translation of scientific knowledge into the products people need to
prevent, control and cure arthritis and related diseases
b. Measure metrics that matter
Provide leadership and oversight in building collaborative, interdisciplinary teams who 03 
achieve meaningful results and accelerate scientific discovery to find a faster cure for people with arthritis and related diseases
04 Engage people with arthritis and related diseases in the scientific discovery process
Delivery on Discovery: How You Can Be Involved
01 Volunteer to be included in the virtual rolodex of subject matter experts
Respond to requests for letters of interest and proposals
02 
Volunteer to be included in a scientific research project or other scientific activity
03 
Donate and/or raise funds to support the mission of the Arthritis Foundation
04 
INPUTS
Figure 2 | Pillar #1 Logic Model: Delivering on Discovery
 Meaningful questions driven by people with arthritis and related diseases
 Subject matter experts to inform scientific discovery
 Understanding how to translate scientific discoveries for real-world use
OUTPUTS
In our collaborations with the Patient-Centered
Outcomes Research Institute (PCORI), the Arthritis Foundation is providing leadership in comparative clinical effectiveness research (CER).23 CER
determines which of the many health care options
available to people with arthritis and those who care
for them work best23. Disseminating the results
and creating knowledge transfer instruments
and shared decision-making tools are essential
for allowing informed decision making for people
with arthritis and related diseases.24,25 PCORI’s
approach addresses the questions and concerns
most relevant to people with arthritis.23 Throughout
the scientific process, people with arthritis, caregivers, clinicians and other health care stakeholders
are involved along with researchers.23 PCORI
encourages all investigators to be creative in how
to include people with arthritis in CER every step
of the process, from study design to study implementation and interpretation of the findings. Every
person, no matter how arthritis affects their life, is
welcome to participate.
An example of a delivering on discovery project
recently initiated by the Arthritis Foundation is a big
data demonstration project. Data from the Million
Veteran Program26 are being analyzed to create
tools for predicting risk of arthritis development
and progression, as well as tools for identifying and
diagnosing arthritis earlier. When the algorithms are
confirmed, clinicians can use the decision-making
tools to diagnose people with arthritis and identify those who need to be referred to rheumatologists. Eventually the tools will be ready to use for
telehealth and may even lead to pre-clinical diagnosis. Telehealth is the process of applying telecommunications and informatics technology to improve
health care delivery and enhance service delivery
models.27 Some of the federal departments that
play primary roles in telehealth are the Department
of Veterans Affairs, the Federal Communications
Commission, the Department of Defense and the
Department of Health and Human Services (HHS)27.
Fully supported and integrated telehealth networks
have the potential to bring significant health benefits
to people with arthritis, including: providing health
care in remote, underserved communities; facilitating
electronic health record usage; increasing accessibility to expertise repositories available at academic, public and private health care entities; connecting geographically-dispersed health care providers;
and facilitating rapid, effective and coordinated
responses during emergencies.27 The data and
methods for this demonstration project are made
possible by years of scientific discovery and technology research and development. The demonstration
project is being implemented with a team of interdisciplinary experts who were introduced to each other
by the Arthritis Foundation.
 Accelerated movement between each stage in scientific discovery
 Discovery and translation of scalable new products, tools and technologies
IMPACT
AMP, which brings together the National Institutes
of Health, 10 biopharmaceutical companies and
several nonprofit organizations to accelerate the
development of new diagnostics and pharmaceutical
treatments.22 AMP partners are implementing a bold
milestone-driven scientific plan that is identifying
and validating the most promising biological targets
for rheumatoid arthritis and systemic lupus erythematosus (lupus). These new targets will inform the
development of new diagnostics and drugs to treat
people with rheumatoid arthritis and lupus.22

for diagnostics, interventions and a cure
Improved decision making and better lives through improved prevention,
earlier diagnosis and new treatments to prevent, control and cure arthritis
and related diseases
15
Scientific Pillar |
2
Decision Making With Metrics
16
M
etrics are used to inform decisions
and to prioritize our efforts to deliver
on discoveries. Understanding
baseline
information,
trends
over time and being able to measure change after
an intervention is implemented are examples of
information needed to identify needs and demonstrate
impact. There is an ongoing need for updated and
new data collection and analytics approaches to
produce arthritis statistics and scientific facts for
decision making (Figure 3).
Every day, the Arthritis Foundation receives internal
and external requests for scientific arthritis facts that
are used for decision making regarding prevention,
treatment, advocacy and other actions. Many of our
responses are based on public health surveillance
data and other information that can be viewed at
websites such as the Centers for Disease Control and
Prevention.28 Inquiries we receive are answered with
a combination of metrics, but not enough data are
available to fully answer the questions. For example,
when a concerned parent asks about the risk of their
child developing osteoarthritis from a sports-related
injury, metrics help us to respond. Although many
physical and social benefits are enjoyed by people
playing sports, more than 2.6 million individuals 19
years of age and younger are treated in the emergency room each year for sports- and recreation-related
injuries.29,30 While more data is critical, we do have an
increasing body of evidence that links the development of osteoarthritis and injuries. We do know that
an estimated 25 percent of Americans living with
knee osteoarthritis experienced a previous anterior
cruciate ligament (ACL) rupture, and the risk of knee
osteoarthritis from knee joint injury is approximately
50 percent.31-38 In the past 20 years, the number of
ACL injuries reported in athletes younger than 18
years of age has increased because of a growing
number of children and adolescents participating in
organized sports, intensive sports training at an earlier age, and a greater rate of diagnosis with increased
awareness and use of advanced medical imaging.39
People with ACL injuries are up to 10 times more
likely to develop arthritis of the knee.39 Learning
to play sports safely can help prevent injuries.29,30
Military professionals are an example of another
population at risk for traumatic joint injuries (29, 30).
In particular, the incidence of traumatic ACL injuries
is 10 times higher among U.S. service personnel than
the reported rate for the U.S. general population.29,32
Another topic of questions received by the Arthritis Foundation is regarding the costs of arthritis to
society. The Bone and Joint Initiative published a
burden of disease report that included economic
costs of musculoskeletal diseases.40 Taking into
account all costs for people with a musculoskeletal
disease, including other comorbid conditions, the cost
of treating these individuals in addition to the cost to
society in the form of decreased wages is estimated
to be nearly $950 billion per year, 7.4 percent of the
2006 gross domestic product .40 The World Health
Organization provides arthritis facts at the country
level by reporting the disability-adjusted-life-year
(DALY).41 The DALY allows the consistent assessment of arthritis burden across diseases, risk factors
and geography by combining the years of life lost
due to premature death and years of life lost due to
time lived in less than full health.41 Additional metrics
17
specific to arthritis regarding costs to society and
returns on investment would be valuable to inform
activities across the Arthritis Foundation.
The Arthritis Foundation is collaborating with the
Centers for Disease Control and Prevention and
other partners such as the National Institutes for
Health to find ways to answer questions that have
not yet been answered, as well as continuing to
update existing facts as new information becomes
available. The Arthritis Foundation is a Healthy
People Consortium Partner to take actions to
strengthen policies and improve practices that are
driven by the best available scientific evidence and
knowledge.42 Healthy People works across Health
and Human Services (HHS) to attain high-quality,
longer lives free of preventable disease, disability,
injury and premature death.43 The Healthy People
2020 objectives track a variety of pain, function
and intervention measures that are important for
monitoring progress in addressing arthritis as a
public health problem.44 Mortality and comorbidity –
arthritis-attributable activity limitations – can affect
prevention and treatment of comorbidities, such as
diabetes and heart disease.45 The Arthritis Foundation is working with other Healthy People Partners
to consider the development of Healthy People
2030 objectives such as:
 Fatigue: a clinically important symptom of many
types of arthritis and other rheumatic conditions
 Early diagnosis of inflammatory types of
arthritis: there is a continuing effort to develop
early biomarkers (both biochemical and imaging
markers) of arthritis, osteoporosis and chronic
back conditions to allow adequate and early
assessment and treatment of these conditions
18
“Science has Arthritis on the Run”
S
ocial participation: an important part of the
WHO International Classification of Functioning, Disability and Health, should be measured
for people with arthritis and other chronic
conditions
A
nxiety and depression: frequently observed
outcomes associated with chronic conditions
such as arthritis and related conditions
A specific source of data to produce metrics for public
health surveillance and health research is registries.
A registry is a collection of information about individual people, usually focused around a specific diagnosis or condition. Participation in a registry is likely to
increase what we know about a specific condition,
help health care professionals improve treatment
and allow researchers to design better studies on
a particular condition, including development and
testing of new treatments.46 Arthritis registries can
help discover how arthritis affects daily activities,
understand the impact of various treatments, find out
which treatments are most beneficial, and uncover
identifiable risks for arthritis that can be limited – so
arthritis can be prevented. Each registry has a focus
on a particular type of data or a specific population
of interest. There are many arthritis registries. A few
examples of arthritis registries include an EHR-enabled registry (RISE),47 the Arthritis Internet Registry
(AIR)48 and the Childhood Arthritis and Rheumatology Research Alliance (CARRA) network.49 The
CARRA network enables data collection about the
major pediatric rheumatic diseases (juvenile arthritis,
systemic lupus, dermatomyositis, scleroderma, vasculitis and pain syndromes). The unique and variable
features of populations and registry designs provide
valuable and complementary data on comparative
effectiveness and safety of treatments such as
biologic agents.50 The Arthritis Foundation can
provide leadership by working across organizations
to standardize data collection in the creation of arthritis registry capabilities for capture, storage, visualization and secure sharing of standardized, validated
core metrics that are patient-driven. If the arthritis
registries in the United States agree to collecting
standardized core metrics, then the data can be
pooled together to have statistical power to answer
questions of interest to everyone. Registries provide
overall acceleration of the research process and also
provide data to design more effective clinical trials.15
In addition to supporting the collection of meaningful data for metrics, the Arthritis Foundation can
also lead the development of new metrics. For
example, development of a pain index relevant to all
people with arthritis could document the therapeutic value of a prescribed medication or non-pharmacologic treatment to provide clinicians and people
with arthritis the objective information needed to
maintain health insurance coverage. One option
for developing such a pain index is by combining
expertise from existing efforts such as Outcome
Measures in Rheumatology (OMERACT) and
Patient Reported Outcomes Measurement Information System (PROMIS). PROMIS is a system of
highly reliable, precise measures of patient-reported
health status for physical, mental and social well-being.51 PROMIS tools measure what people are able
to do and how they feel by asking questions about
factors such as anxiety, anger, depression, fatigue,
pain behavior, pain interference, satisfaction with
discretionary social activities and satisfaction with
social roles.51
registries
Arthritis
can help discover how
arthritis affects
daily activities, understand the impact of
various treatments, and uncover identifiable risks for arthritis that
can be limited — so arthritis can be prevented.
19
03 Collaborate with Healthy People to achieve and measure progress on 2020 objectives
04 Collaborate with Healthy People to develop new 2030 objectives
Collaborate with international efforts to measure and compare arthritis
05 
statistics across geographies
Convene interdisciplinary subject matter experts across organizations to
06 
standardize and validate core metrics for registries that are patient-driven
INPUTS
these questions
 Registry data, biomarker data, health survey data and other types of data
 Analytics to translate accurate, relevant and timely data into results
OUTPUTS
01 Facilitate the updating of priority arthritis statistics
Prioritize questions yet to be answered and determine options to answer
02 
Figure 3 | Pillar #2 Logic Model: Decision Making With Metrics
 Quantification of the consequences of arthritis and related diseases
 Measures to document impact and monitor progress for specified goals
IMPACT
Decision Making With Metrics: Objectives
 Fact-based metrics for decision making and guiding actions to improve the
health of people across the lifespan with arthritis and related diseases
Convene interdisciplinary subject matter experts to develop a pain index for
07 
people with arthritis
Decision Making With Metrics: How You Can Be Involved
01 Identify questions that are relevant to outcomes of persons with arthritis
02 Identify existing data that could be used to answer priority questions
03 Identify improved measurement and analytic approaches to answering questions
04 Contribute to the achievement of the Healthy People 2020 objectives
05 Identify and provide lessons learned from relevant international efforts
06 Volunteer to join a registry
07 Identify registry experts and relevant registries and provide lessons learned
08 Identify and provide lessons learned from relevant pain index activities
09 Donate and/or raise funds to support the mission of the Arthritis Foundation
20
21
Scientific Pillar |
3
Building Human Capital
22
T
o assure that the field of scientific
research for arthritis and related diseases
has a strong interdisciplinary pipeline
of scientists to implement our first two
pillars, the third pillar is focused on building human
capital for today and for the future. Scientific research
for arthritis and related diseases lacks a critical mass
of investigators to sustain the scientific pipeline.52,53
Finding time to participate in appropriate training
opportunities is a challenge for many investigators.54
As a nonprofit, the Arthritis Foundation can design
investigator-friendly training opportunities to build
human capital for the scientific pipeline. Scientists can
network and learn from each other while staying up to
date on interdisciplinary skills that will position them
to turn scientific discoveries into real-world uses.55
Successful health science training programs create
diversity, energize the trainers, inspire the trainees and
recruit and retain talent.56
The Arthritis Foundation seeks to strengthen the
pipeline of talent conducting scientific research
and development for arthritis and related diseases
by recruiting 1) trainees who are experts in arthritis
research but would benefit from training in interdisciplinary scientific research and development skills,
and 2) trainees who have never worked in the field
of arthritis research but are experienced investigators interested in applying their talents to arthritis
research, and would benefit from understanding
the history and current needs in the field of arthritis research (Figure 4). The Arthritis Foundation will
provide curriculum for the interdisciplinary trainings
and identify experts who will be paid for their time
to provide real-life examples of topics covered in
the curriculum. Travel to in-person trainings will be
covered for both trainees and experts. This training
program would be symbiotic with existing training
and mentoring programs.
This training approach is unique and filling a much
needed scientific research and development gap.
There are many training and mentoring programs
that we can learn from as we develop our implementation plan. For example, this new program can
complement and learn from the American College
of Rheumatology/CARRA Mentoring Interest
Group, which encompasses the majority of fellows
and junior faculty in pediatric rheumatology.57
Another source of lessons learned that can be built
upon for the Arthritis Foundation training program
is the Arthritis Foundation’s experience of being
one of the sponsors for the 2014 Sage Bionetworks’ (a nonprofit research organization working to
redefine how complex biological data are gathered,
shared and used) Rheumatoid Arthritis Responder
Challenge. This challenge was intended to crowdsource human genetics with the ultimate objective
of identifying genetic predictors that could improve
treatment for those suffering from rheumatoid
arthritis.58 This project inspired the imaginations of
scientists around the world — many of whom had
never thought about or studied arthritis. To steer the
investigators into the validation phase, Sage Bionetworks quickly realized the need to provide training
about the history and needs of rheumatoid arthritis
research so that investigators new to arthritis could
build upon existing knowledge and improve the
deliverables being produced.
23
03  Pilot test the training program
04  Evaluate the pilot training program
05  Revise the training program based on evaluations
06  Implement the training program including ongoing evaluation
07  Track the impact of the training program
INPUTS
a. Arthritis research history and current needs
b. Interdisciplinary skills to turn scientific discoveries into real-world uses
OUTPUTS
01 Develop an implementation plan for the training program
02  Identify existing curriculum and/or develop new curriculum for the training program
FIGURE 4 | Pillar #3 Logic Model: Building Human Capital
IMPACT
Building Human Capital: Objectives
Building Human Capital
 Understanding of training and mentoring program approaches
 Understanding of how to turn scientific discoveries into real-world uses
 Trainees and experts
Curriculum
 Local connections are strengthened
 Quality proposals
 Successful scientific research and development that accomplishes a
specific scientific goal
 Scientific research pipeline is strengthened and scientific discovery is
catalyzed and accelerated for arthritis and related diseases
Building Human Capital: How You Can Be Involved
01 Spread the word about the interdisciplinary training program
02 Be a trainee
03 Identify and provide lessons learned from other mentoring and training programs
04 Volunteer to be an expert who develops or teaches the curriculum
05 Volunteer to assist with planning, implementation and/or evaluation of the program
06 Donate and/or raise funds to support the mission of the Arthritis Foundation
24
25
GOAL S A ND TA R GE T S
Goals and Targets
26
T
he Arthritis Foundation’s mission is to improve lives through leadership in the prevention, control and
cure of arthritis and related diseases. The scientific strategy is the direction the Arthritis Foundation
Science Department is going during 2015-2020 to bring everyday wins now and in the future for
a lifetime of better. The scientific strategy has three pillars. Each pillar is designed to champion and
accelerate progress for achieving our mission. The goal for each pillar is the impact of the inputs and outputs
for each pillar (see Figures 2-4). The three pillars and their goals are as follows:
Pillar #1: Delivering on Discovery
 Improved decision making and better lives through improved prevention, earlier diagnosis
and new treatments to prevent, control and cure arthritis and related diseases
Pillar #2: Decision Making With Metrics
 Fact-based metrics for decision making and guiding actions to improve the health of
people across the lifespan with arthritis and related diseases
Pillar #3: Building Human Capital
 Scientific research pipeline is strengthened and scientific discovery is catalyzed and
accelerated for arthritis and related diseases
In collaboration with other organizations, the Arthritis Foundation Scientific Strategy 2015-2020 is contributing to the achievement of the following Healthy People 2020 targets. One of the criteria for selecting these
targets is that existing data sources are available to measure progress on meeting the targets.
27
Goals and Targets
Goals and Targets
Healthy People 2020 Objectives and Targets Relevant to Arthritis Foundation Scientific Strategy (59)*
OBJECTIVE
BASELINE†
TARGET
TARGET-SETTING
METHOD
Reduce the mean level of joint pain among
adults with doctor-diagnosed arthritis
5.6 on a
VAS of 0-10
5 mean
pain level
10%
improvement
NHIS,
CDC/NCHS
Reduce the proportion of adults with doctor-diagnosed arthritis who experience a limitation in
activity due to arthritis or joint symptoms
39.4%
35.5%
10%
improvement
NHIS,
CDC/NCHS
Reduce the proportion of adults with
doctor-diagnosed arthritis who find it “very
difficult” to walk a quarter of a mile — about
three city blocks
difficult” to walk up10 steps without resting
difficult” to stoop, bend or kneel
10.8%
21.7%
difficult” to use fingers to grasp or handle
small objects
4.4%
doctor-diagnosed arthritis who have difficulty
in performing two or more personal care
activities, thereby preserving independence
2.7%
doctor-diagnosed arthritis who report
serious psychological distress
7.3%
TARGET
TARGET-SETTING
METHOD
DATA
SOURCES
Increase the proportion of adults with
doctor-diagnosed arthritis who receive
health care provider counseling for physical
activity or exercise
52.2%
57.4%
10%
improvement
NHIS,
CDC/NCHS
10.6%
11.7%
10%
improvement
NHIS,
CDC/NCHS
13.7%
10%
improvement
NHIS,
CDC/NCHS
9.7%
10%
improvement
NHIS,
CDC/NCHS
chronic joint symptoms who have seen a
health care provider for their symptoms
72.0%
79.2%
10%
improvement
NHIS,
CDC/NCHS
Reduce activity limitation due to chronic
back conditions
30.7 adults
per 1,000
27.6 adults
per 1,000
10%
improvement
NHIS,
CDC/NCHS
Increase the proportion of adults who
self-report good or better physical health
78.8
79.8
Minimal
statistical
significance
NHIS,
CDC/NCHS
Increase the proportion of adults who
self-report good or better mental health
79.1
80.1
Minimal
statistical
significance
NHIS,
CDC/NCHS
Increase the proportion of older adults with one
or more chronic health conditions who report
confidence in managing their conditions
TBD
TBD
TBD
Reduce the proportion of older adults who
have moderate to severe functional limitations
29.3%
26.4%
10%
improvement
MCBS, CMS
Increase the proportion of older adults with
reduced physical or cognitive function who
engage in light, moderate or vigorous leisuretime physical activities
32.6%
35.9%
10%
improvement
NHIS,
CDC/NCHS
19.5%
4.0%
2.4%
6.6%
10%
improvement
NHIS,
CDC/NCHS
10%
improvement
NHIS,
CDC/NCHS
10%
improvement
NHIS,
CDC/NCHS
10%
improvement
NHIS,
CDC/NCHS
NHIS,
CDC/NCHS
35.0%
31.5%
10%
improvement
doctor-diagnosed arthritis who are
limited in their ability to work for pay due
to arthritis
33.1%
29.8%
10%
improvement
NHIS,
CDC/NCHS
45.3%
10%
improvement
NHIS,
CDC/NCHS
BASELINE†
OBJECTIVE
doctor-diagnosed arthritis who have had
effective, evidence-based arthritis education
as an integral part of the management of
their condition
Reduce the unemployment rate among
adults with doctor-diagnosed arthritis
Increase the proportion of overweight and
obese adults with doctor-diagnosed arthritis
who receive health care provider counseling
for weight reduction
28
15.2%
DATA
SOURCES
BRFSS,
CDC/PHSIPO
*VAS = visual analog scale; NHIS = National Health Interview Survey; CDC = Centers for Disease Control and Prevention; NCHS = National Center for
Health Statistics; NHANES = National Health and Nutrition Examination Survey; NHDS = National Hospital Discharge Survey; TBD = to be determined;
BRFSS = Behavioral Risk Factor Surveillance System; PHSIPO = Public Health Surveillance and Informatics Program Office; MCBS = Medicare Current
Beneficiary Survey; CMS = Centers for Medicare & Medicaid Services
†Baseline data was age adjusted to the year 2000 standard population.
41.2%
29
Goals and Targets
Goals and Targets
In collaboration with other organizations, the Arthritis Foundation Scientific Strategy 2015-2020 is contributing to the achievement of the following Accelerating Medicines Partnership (AMP) goals.
60
In collaboration with other organizations, the Arthritis Foundation Scientific Strategy 2015-2020 is contributing to the achievement of the following Biomarkers Consortium goals.
Accelerating Medicines Partnership (AMP) Goals
Biomarkers Consortium Goals
The Accelerating Medicines Partnership (AMP) has the ultimate goal of increasing the number
of new diagnostics and therapies for patients, and reducing the time and cost of developing
them.52 By optimizing the process for identifying and validating clinically-relevant disease
targets for drug design, AMP aims to increase efficiency through:
The Biomarkers Consortium’s goal is to combine the forces of the public and private sectors to
accelerate the development of biomarker-based technologies, medicines and therapies for the
prevention, early detection, diagnosis and treatment of disease.53
 Reducing development time: accelerating the hard work of sorting through a large
number of candidates to identify the best biological targets for drug development
could save months or even years of early stages of discovery.
 Improving prospects for success: with disease targets and biomarkers that have been
validated rigorously with human data, higher confidence about efficacy should be
achieved, allowing researchers to move the most promising compounds quickly into
the pipeline with the expectation of fewer failures in late-stage clinical trials.
 Lowering costs: shorter development timeframes and fewer late-stage drug failures
should reduce the cost of delivering new and effective medicines to patients.
61
Strategies to attain that overall goal include the following:
 Facilitate the development and qualification of biomarkers using new and
existing technologies;
 Help qualify biomarkers for specific applications in diagnosing disease, predicting
therapeutic response or improving clinical practice;
 Generate information useful to inform regulatory decision making;
 Make consortium project results broadly available to the entire scientific community.
AMP will improve the process for identifying and validating clinically-relevant disease targets
for drug design by:
 Providing better understanding of biological targets and identification of valid biomarkers
to enable more robust clinical trials — in part by testing therapies on patients most likely
to respond to them based on the molecular profiles of their disease.
AMP will increase the number and effectiveness of new targeted therapies via:
 Understanding the biological pathways underlying disease and the specific
biological targets that can alter disease to lead to more rational drug design and
better tailored therapies.
 Reducing the number of failures in Phase II and Phase III clinical trials to increase the
number of new drugs developed per $1 billion of research and development investment.
 Increasing expected returns to enhance the attractiveness of investing in
drug development.
30
31
Together, we can have “arthritis on the run” by
ON THE
RUN
accelerating
the movement
of scientific knowledge to a faster cure.
References
1
Cheng YJ, Hootman JM, Murphy LB, et al. Prevalence of doctor-diagnosed arthritis and arthritis-attributable activity limitation — United
States, 2007–2009. MMWR 2010;59(39):1261–1265.
19
Foundation for the National Institutes of Health. The Biomarkers
Consortium. Accessed October 1, 2014.
2
Lawrence RC, Felson DT, Helmick CG, et al, for the National Arthritis
Data Workgroup. Estimates of the prevalence of arthritis and other
rheumatic conditions in the United States: Part II. Arthritis Rheum
2008;58(1):26–35
20
Osteoarthritis Initiative. The Osteoarthritis Initiative: A Multi-center
Observational Study of Men and Women. Accessed October 1, 2014.
21
Foundation for the National Institutes of Health. 2012. Osteoarthritis
Biomarkers Project May Lead to Better Quality of Life for Those with
Osteoarthritis. Accessed October 1, 2014.
22
National Institutes of Health. Accelerating Medicines Project:
Autoimmune Diseases of Rheumatoid Arthritis and Lupus.
Accessed October 1, 2014.
23
Patient-Centered Outcomes Research Institute. About Us. Accessed
October 1, 2014.
24
Sacks JJ, Helmick CG, Langmaid G. Deaths from arthritis and other
rheumatic conditions, United States, 1979–1998. J Rheumatol
2004;31:1823–1828.
Office of Communications and Knowledge Transfer (OCKT). February
2014. Agency for Healthcare Research and Quality, Rockville, MD.
Accessed October 10, 2014
25
Sacks JJ, Helmick CG, Langmaid G, et al. Trends in deaths from
systemic lupus erythematosus- United States, 1979-1998. MMWR
2002;51(17):371–374.
Rader T, Pardo JP, Stacey D, et al. Update of strategies to translate
evidence from Cochrane Musculoskeletal Group systematic reviews for
use by various audiences. J Rheumatol 2014; 41(2):194-205.
26
Department of Veterans Affairs Office of Research & Development.
Million Veteran Program (MVP). Accessed October 12, 2014
27
Department of Health and Human Services. 2009. Telehealth Report
to Congress. Accessed October 1, 2014.
3
Sacks JJ, Luo Y-H, Helmick CG. Prevalence of specific types of
arthritis and other rheumatic conditions in the ambulatory health care
system in the United States, 2001-2005. Arthritis Care & Research
2010;62(4):460-464.
4
Sacks JJ, Helmick CG, Luo YH, et al. Prevalence of and annual
ambulatory health care visits for pediatric arthritis and other rheumatologic conditions in the United States in 2001-2004. Arthritis Care Res
2007;57(8):1439–1445.
5
6
7
Brault MW, Hootman JM, Helmick CG, et al. Prevalence and Most
Common Causes of Disability Among Adults - United States, 2005.
MMWR 2009;58(16):421-426.
28
8
Centers for Disease Control and Prevention. About Arthritis Disabilities
and Limitations. Accessed October 13, 2014.
Centers for Disease Control and Prevention. Arthritis-Related Statistics. Accessed October 1, 2014.
29
9
Alliance for Academic Internal Medicine. 2010. ASP Honors Walter G.
Barr, MD, with Eric G. Neilson, MD, Distinguished Professor.
National Institutes of Health. Preventing Musculoskeletal Sports
Injuries in Youth: A Guide for Parents. Accessed October 1, 2014
30
Centers for Disease Control and Prevention. Sports Injuries: The
Reality. Accessed October 1, 2014
10
Arthritis Foundation.
11
National Institutes of Health: National Institute of General Medical
Sciences. Why Do Basic Research. Accessed September 29, 2014.
31
Hill CL, Seo GS, Gale D, et al. Cruciate ligament integrity in
osteoarthritis of the knee. Arthritis Rheum 2005;52:794-799.
12
National Institutes of Health Big Data to Knowledge: About BD2K.
Accessed September 29, 2014.
32
13
National Institutes of Health: National Heart, Lung, and Blood Institute.
New NHLBI Center Focuses on Translation Research and Implementation Science. Accessed September 29, 2014.
Amin S, Guermazi A, Lavalley MP, et al. Complete anterior cruciate ligament
tear and the risk for cartilage loss and progression of symptoms in men and
women with knee osteoarthritis. Osteoarthritis Cartilage 2008;16:897-902.
33
Lohmander LS, Ostenberg A, Englund M, et al. High prevalence of knee
osteoarthritis, pain, and functional limitations in female soccer players
twelve years after anterior cruciate ligament injury. Arthritis Rheum
2004;50:3145-3152.
34
Englund M, Lohmander LS. Risk factors for symptomatic knee
osteoarthritis fifteen to twenty-two years after meniscectomy. Arthritis
Rheum 2004;50:2811-2819.
35
von Porat A, Roos EM, Roos H: High prevalence of osteoarthritis 14
years after an anterior cruciate ligament tear in male soccer players: a
study of radiographic and patient relevant outcomes. Ann Rheum Dis
2004;63:269-273.
36
Gelber AC, Hochberg MC, Mead LA, et al. Joint injury in young adults
and risk for subsequent knee and hip osteoarthritis. Ann Intern Med
2000;133:321-328.
14
15
Balas EA, Boren SA. Yearbook of Medical Informatics: Managing
Clinical Knowledge for Health Care Improvement. Stuttgart, Germany:
Schattauer Verlagsgesellschaft mbH; 2000.
FasterCures. 2013. Honest Brokers for Cures: How Venture
Philanthropy Groups are Changing Biomedical Research. Accessed
October 1, 2014.
16
FasterCures. 2013. Measuring and Improving Impact: A Toolkit for
Nonprofit Funders of Medical Research. Accessed October 1, 2014.
17
National Center for Complementary and Alternative Medicine.
Complementary, Alternative, or Integrative Health: What’s In a Name?
18
Hunter DJ, Losina E, Guermazi A, et al. A pathway and approach to
biomarker validation and qualification for osteoarthritis clinical trials.
Curr Drug Targets 2010;11(5):536-45.
33
References
Appendix |
1
Arthritis Organizations
37
38
Cooper C, Snow S, McAlindon TE, et al. Risk factors for the incidence
and progression of radiographic knee osteoarthritis. Arthritis Rheum
2000;43:995-1000.
39
LaBella CR, Hennrikus W, Hewett TE, et al. Anterior cruciate
ligament injuries: diagnosis, treatment, and prevention. Pediatrics
2014;133;e1437.
.40
41
42
34
Kessler MA, Behrend H, Henz S, et al. Function, osteoarthritis and
activity after ACL-rupture: 11 years follow-up results of conservative
versus reconstructive treatment. Knee Surg Sports Traumatol Arthrosc
2008;16:442-448.
The Bone and Joint Initiative USA. 2011. The Burden of Musculoskeletal
Diseases in the United States, Second Edition. Accessed October 1,
2014.
World Health Organization. Global Burden of Disease. Accessed
October 1, 2014.
Healthy People 2020. Consortium Members. Accessed October 1,
2014.
43
Healthy People 2020. Home. Accessed October 1, 2014.
44
Healthy People 2020. Objectives: Arthritis, Osteoporosis, and Chronic
Back Conditions. Accessed October 1, 2014.
45
Bolen J, Murphy L, Greenlund K, et al. Arthritis as a potential barrier to
physical activity among adults with heart disease –United States, 2005
and 2007. Morbid Mortal Wkly Rept. 2009;58(7):165-169.
49
The CARRA Registry. Specific Aims. Accessed October 1, 2014.
50
Curtis JR, Jain A, Askling J, et al. A Comparison of Patient Characteristics and Outcomes in Selected European and U.S. Rheumatoid Arthritis
Registries. Semin Arthritis Rheum 2010;40(1):2–14.e1.
51
Patient Reported Outcomes Measurement Information System. About
PROMIS. Accessed October 1, 2014.
52
American College of Rheumatology. Introduction to the Survey.
53
American College of Rheumatology. 2012. Final report: Blue Ribbon
Panel on Academic Rheumatology. Accessed October 1, 2014. .
54
Deal CL, Hooker R, Harrington T, et al. The United States Rheumatology Workforce: Supply and Demand, 2005-2025. Arthritis Rheum
2007;56:722-9. Accessed September 29, 2014
55
FasterCures. 2010. Getting Started: A Medical Research and Development Primer. Accessed October 1, 2014.
56
Robert Wood Johnson Foundation. September 10, 2008. RWJF
Awards 15 Nurse Faculty Scholars Research and Mentoring Support.
57
Nigrovic PA, Muscal E, Riebschleger M, et al. AMIGO: a novel
approach to the mentorship gap in pediatric rheumatology. J Pediatr
2014;164:226-7.
58
Sage Bionetworks. Rheumatoid Arthritis Responder Challenge.
46
National Institutes of Health. List of Registries. Accessed October 1,
2014.
59
Healthy People 2020. 2020 Topics & Objectives – Objectives A-Z.
47
American College of Rheumatology. Rheumatology Clinical Registry.
60
Foundation for the NIH. Accelerating Medicines Partnership: Key
Initiatives. Accessed October 9, 2014.
48
Arthritis Foundation. Arthritis Internet Registry. Accessed October 1,
2014.
61
The Biomarkers Consortium What We Do. Accessed October 9, 2014.
As part of the strategic planning process, the Arthritis Foundation identified organizations conducting scientific
activities in the field of research for arthritis and related diseases. A summary of selected organizations are
listed in this appendix.
ORGANIZATION
DESCRIPTION
REFERENCE
Advocates for Fibromyalgia
Funding, Treatment Education
and Research (AFFTER)
Surveys to members with abstracts of results
published; has awarded two small research grants
AFFTER research
Agency for Healthcare
Research and Quality (AHRQ)
Career development; pre-doc and post-doc
fellowships; training programs; program projects;
research projects; cooperative agreements
AHRQ Funding
and Grants
Agency for Healthcare
Research and Quality (AHRQ)
Registry of Patient Registries
AHRQ Registries
American Academy of
Orthopedic Surgeons (AAOS)
Collects, analyzes and disseminates
scientific data and information; clinical practice
guidelines; appropriate use criteria
AAOS research
American Academy of
Orthopedic Surgeons (AAOS)
American Joint Replacement Registry
AJRR
American College of
Rheumatology (ACR)
Mentorship program and AMIGO
(ACR/CARRA Mentoring Interest Group
for Pediatric Rheumatologists)
ACR Mentor
American College of
Rheumatology (ACR)
Epidemiologic studies as a future direction
ACR Research
American College of
Rheumatology (ACR)
ACR Registry and Rheumatology Informatics
System for Effectiveness (RISE) Registry
Rheumatology
Clinical Registry
American College of
Rheumatology (ACR)
Promotes research in both adult and
pediatric rheumatology
Research Agenda
American Orthopaedic Society
for Sports Medicine (AOSSM)
Advances clinical research in orthopaedic sports
medicine and supports career stages for AOSSM
members
Research
Arthritis Australia
Young and emerging musculoskeletal researchers
Arthritis Australia
35
APPENDIX 1
Internet-based, patient-reported outcomes
registry – a partnership with the Arthritis
Foundation, National Databank for Rheumatic
Diseases, Quest Diagnostics and North Shore LIJ
AIR
Cincinnati Children’s
Center for Autoimmune Genomics and
Etiology (CAGE); registry and biorepository
CAGE
Awards to young MD and PhD investigators
to develop careers; grants to cure arthritis and
related autoimmune diseases
ANRF Grants
Supports military-relevant, peer-reviewed
orthopaedic research; provides all warriors
affected by orthopaedic injuries sustained in the
defense of our Constitution the opportunity for
optimal recovery and restoration of function
Orthopaedic
Arthritis National Research
Foundation (ANRF)
Congressionally Directed Medical
Research Programs (CDMRP),
Department of Defense, Peer
Reviewed
Orthopedic Research Program
Arthritis Research UK
Funds grants for all types of arthritis and related
musculoskeletal conditions from laboratory-based
science through to multi-center clinical trials
Research Strategy
Consortium of Rheumatology
Researchers of North America
(CORRONA)
Rheumatoid arthritis, gout and
spondyloarthritis registries
(psoriasis in development)
CORRONA
Arthritis Society Canada
Overall goal to search for the causes and cures
of arthritis and to promote the best possible
treatments and care for those living with arthritis
Strategic
Research Plan
Cure JM Foundation
Primary goal of finding a cure for Juvenile
Myositis (JM); clinical and translational research
projects; pilot studies
Research
Association Francaise De Lutte
Antirhumatismale (AFLAR)
Research in France; has a National Alliance
Against Osteoarthritis
AFLAR
Danish Rheumatism Association
Funds a substantial part of the non-commercial
rheumatology research in Denmark; conducts
outreach campaigns
Research
Brigham and Womens Hospital
Brigham Rheumatoid Arthritis Sequential Study
(BRASS)
BRASS
National Center for Health Statistics collects
data to monitor the health of the United States
population
Surveys
The vision is to improve the health and well-being
of all military service members, veterans and
beneficiaries; this program includes three
research topic areas for people with arthritis
Research
Centers for Disease Control and
Prevention
Department of Defense
Congressionally Mandated Topic
Areas
Duke University
Prevention
Public health agenda addressing the assessment
function for psoriasis and psoriatic arthritis
Agenda
Duke Clinical Registries, including autoimmunity,
lupus and vasculitis
Duke Clinical
Registries
Prevention/Arthritis Foundation
Blueprint for action to reduce osteoarthritis
symptoms such as pain, disability and loss of
function
National Agenda
European League Against
Rheumatism (EULAR)
EULAR Standing Committee on
Epidemiology
EULAR
Epidemiology
Fondation Arthritis Recherche &
Rhumatismes
Benchmarking of labs working on rheumatic
diseases in France; Launched Network Program
Fondation Arthritis
Childhood Arthritis and
Rheumatology Research Alliance
(CARRA)
Strategy for each disease category is based on
existing knowledge about that condition, as well
as outstanding needs for children affected by
these diseases
Scientific Agenda
Foundation for Physical Therapy
Scholarships; fellowships; grants to emerging
investigators
Foundation for
PT Funding
Childhood Arthritis and
Rheumatology Research
Alliance (CARRA)
Patient and pharmacosurveillance registry; >9000
patients enrolled
CARRAnet
Foundation for the National
Institutes of Health
Public-private partnership developed to transform
the current model for identifying and validating
the most promising biological targets for the
development of new drugs and diagnostics
AMP
Cincinnati Children’s
Research registry for juvenile rheumatoid arthritis;
completed project
JRA Research
Registry
Global Healthy Living Foundation
Arthritis Patient Partnership with Comparative
Effectiveness Researchers (AR-PoWER)
AR-POWER
Arthritis Internet Registry (AIR)
36
37
APPENDIX 1
38
Hospital for Special Surgery
(HSS)
Several arthritis-related and conditionspecific registries
HSS Registries
Institute for Health Metrics and
Evaluation (IHME)
Global burden of disease estimates measuring
the impact of hundreds of diseases, injuries and
risk factors in 21 regions around the world over
two decades
Metrics
Kaiser Permanente
KP National Implant Registries
Kaiser Implant
Registries
Kaiser Permanente
KP Total Joint Replacement Registry
Kaiser TJR Registry
Kaiser Permanente
Autoimmune Disease Registry
Kaiser Autoimmune
Lupus Foundation of America
Grants and fellowships for young
investigators
Lupus research
Program directed to break down
barriers in drug development
Lupus barriers
National Center for Advancing
Translational Sciences
Catalyzes the generation of innovative methods
and technologies to enhance the development,
testing and implementation of diagnostics and
therapeutics
NCATS
National Data Bank for
Rheumatic Diseases
Patient-reported arthritis registries
NDB
National Institute for Arthritis
and Musculoskeletal and Skin
Diseases (NIAMS)
Long-range plans for health disparities and
information dissemination
NIAMS
Long-Range Plan
National Institute of Arthritis
and Musculoskeletal and Skin
Diseases (NIAMS)
Fellowship programs and training grants
NIAMS Programs
National Psoriasis Foundation
National Psoriasis Foundation funds the start-up
of promising new and innovative studies through
Discovery and Translational grant programs.
Psoriasis Mission
National Psoriasis Victor Henschel BioBank
Psoriasis biobank
New York University Langone
Medical Center
Arthritis Translational Registry Biorepository
NYU Arthritis
Registry
New York University Medical
Center
NIH Research Registry for Neonatal Lupus is the
largest database of families in which one child
has had neonatal lupus
National Research
Registry for Neonatal
Lupus
North American Rheumatoid
Arthritis Consortium (NARAC)
Genetics of Rheumatoid Arthritis Registry
NARAC Registry
Oklahoma Medical Research
Foundation
Lupus Family Registry and Repository (LFRR)
is a long-term research project operating in
conjunction with the Lupus Genetics Studies
Lupus Family
Registry and
Repository
Outcome Measures in
Rheumatology
OMERACT develops and validates clinical and
radiographic outcome measures in rheumatoid
arthritis, osteoarthritis, psoriatic arthritis,
fibromyalgia and other rheumatic diseases
OMERACT
Orthopaedic Research Society
(ORS)
Advances the global orthopaedic research
agenda through excellence in research, education,
collaboration, communication and advocacy; offers
educational and research funding opportunities
ORS
Orthopedic Research &
Education Foundation (OREF)
Career development grants, clinical research
grants, mentored clinical scientist grants, new
investigator award, post-doctoral fellowships,
resident training grants, resident research grants,
medical research fellow grants, issue/diseasespecific grants, collaborative research agenda
in draft, which includes basic science research,
clinical research and health services research
OREF grants
Osteoarthritis Research Society
International (OARSI)
Released new evidence-based guidelines for
the non-surgical treatment of osteoarthritis of
the knee that, for the first time, are targeted to
differing patient characteristics
Guidelines
International (OARSI) and
Foundation for NIH (FNIH)
Osteoarthritis biomarkers project with FNIH;
evaluate imaging and biochemical biomarkers
to find more precise ways to measure the
progression of disease and the effectiveness of
new treatments
OA Biomarkers
International (OARSI) and
Foundation for NIH (FNIH)
Food and Drug Administration Osteoarthritis
Initiative; critical appraisal of certain fundamentals
related to the design of clinical development
programs
FDA OA Initiative
39
APPENDIX 1
40
Patient Reported Outcomes
Measurement Information
System (PROMIS)
Funded by the National Institutes of Health,
PROMIS is a system of highly reliable, valid,
flexible, precise and responsive assessment tools
that measure patient-reported health status
About PROMIS
The Vasculitis Patient-Powered
Research Network (V-PPRN)
PCORI-funded research network including
Vasculitis Foundation, Vasculitis Clinical Research
Consortium, patient groups and others
Vasculitis PPRN
Patients Like Me
Osteoarthritis, rheumatoid arthritis and
fibromyalgia patient-reported data and social
network
University of Alabama
Birmingham
Treatment Efficacy and Toxicity in Rheumatoid
Arthritis Database and Repository (TETRAD);
complete; seeking funds to continue
TETRAD
Patients Like Me
Patients, Advocates and
Rheumatology Teams Network
for Research and Service
(PARTNERS)
PARTNERS
Birmingham
Consortium for the Longitudinal Evaluations of
African-Americans with Early Rheumatoid Arthritis
(CLEAR)
CLEAR
Pediatric rheumatic disease patient-powered
research network (PPRN); members include
CARRA, PR-COIN, Arthritis Foundation and
Birmingham
Treatment of Early Aggressive Rheumatoid
Arthritis (TEAR); included registry; study complete
TEAR
Pediatric Rheumatology Care &
Outcomes Improvement Network
(PR-COIN)
Creating a sustainable network that uses a
registry database to measure our performance on
measures of quality of care, learn more about the
health status of juvenile idiopathic arthritis (JIA)
patients in our care, as well as to inform future
improvement projects
Quality
University of California
San Francisco
Sjögren’s Syndrome International Collaborative
Clinical Alliance (SICCA); collaborative group of
scientists
SICCA
Arthritis research approach in Netherlands
Research
Veterans Affairs Rheumatoid Arthritis (VARA)
registry
VARA
Reumafonds
University of Nebraska
Medical Center
Rheumatoid Arthritis
Investigational Network (RAIN)
A group of rheumatologists who conduct
investigator-initiated trials; database
RAIN
U.S. Bone and Joint Initiative
USBJI Mission
Rheumatology Research
Foundation (RRF)
Goal A: workforce development,
including preceptorships, education and training
awards, and career development awards; Goal
B: targeted research, including pilot grants
and innovative research grants; Goal C: brand
awareness; Goal D: financial resources; Goal E:
organizational capacity
RRF Opportunities
Advocacy and promotion; goals are to increase
funding for musculoskeletal research, promote
health service research, patient-centered
integrated systems and musculoskeletal
education in curriculum for medical schools
Vasculitis Clinical Research
Consortium
Contact registry of people willing to be involved in
research and clinical trials
Vasculitis
Consortium
Vasculitis Clinical Research
Consortium
Vasculitis
Mentoring
Scalable Collaborative
Infrastructure for a Learning
Healthcare System (SCILHS)
Clinical Data Research Network (CDRN) will
collect arthritis data
SCILHS
Runs a mentoring program as part of the NIH
Rare Diseases Clinical Research Network’s
funding model
World Health Organization
Economic Burden of Disease
WHO Disease
Burden
Spondylitis Association of
America
National patient registry on ankylosing spondylitis
Research
World Health Organization
WHO Guide to Identifying the Economic
Consequences of Disease and Injury
WHO
Impact Guide
Stanford University
Arthritis, Rheumatism, and Aging Medical
Information System (ARAMIS)
ARAMIS
41
Appendix |
2
Organizations to Find a Cure
In our scientific strategic planning process, the Arthritis Foundation identified organizations that are focused
on finding a cure for a disease or health problem that is not arthritis. A summary of selected organizations is
provided in this appendix.
ORGANIZATION
DESCRIPTION
REFERENCE
Alzheimer’s
Association
International new investigators program
Alzheimer New
Investigators
Alzheimer’s
Association
Coalition Against Major Diseases with Critical Path Institute
Alzheimer Critical
Path
Alzheimer’s Drug
Discovery Foundation
Venture philanthropy program; fund preclinical research and
early-stage clinical trials; focus on new drug targets
Alzheimer Drug
Discovery
American Association
for Cancer Research
Emerging scientists program for high school and undergraduate
students; creating communities around key disciplines; funding
promising projects; convening thought leaders; celebrating key
contributors; collaborating with organizations
AACR Complete
Life Cycle
American Brain Tumor
Association
Early career scientist grants; new drug development and
repurposed drugs; targeted therapies, signaling pathways,
gene expression; personalized medicine; imaging; vaccines
and immunotherapy; improving survivorship
Brain Tumor Grants
American Cancer
Society
Intramural research in epidemiology and surveillance;
extensive extramural research program
Cancer Society
Intramural
American Diabetes
Association
Pathways to Stop Diabetes: an effort to inspire and support a
new generation of diabetes researchers
Diabetes 100
Brilliant Researchers
American Federation
for Aging Research
Training grants, young investigator awards, pilot studies for
independent research
AFAR Funding
American Heart
Association
Two of its 12 Essential Elements: 1) Ensure funding
mechanisms for investigators at all career stages and
across disciplines; 2) Provide programs which, in addition to
supporting the pursuit of research in question, also facilitate
expansion of investigator skills
Heart 12 Essential
Elements
Will be launching an outcomes registry in 2015
APTA Registry
American Physical
Therapy Association
42
Autism Speaks
Goals to promote cross-disciplinary cooperation; fund
research; organize research summit meetings; establish
standards for data collection and management; five focus
areas for science portfolio: etiology, biology (mechanisms of
disease), diagnosis, treatment, dissemination
Autism Strategy
Avon Foundation for
Women
Provides safety net access-to-care programs for medically
underserved; outreach programs focused on education and
screening for breast cancer; funds scientific research into
causes, prevention, tests to assess risk, and treatment
Avon Foundation
Bill and Melinda Gates
Foundation
How to identify, support and shape scientific research that
can have the most impact and to accelerate the translation
of scientific discoveries into solutions that improve people’s
health and save lives
Discovery and
Translational
Sciences
Breast Cancer
Research Foundation
Provides seed funding for clinical or translation research;
research proposals are invited by Scientific Advisory Board;
focus is on cause and cure
BCRF Mission
BrightFocus
Foundation
Provides initial funding for highly innovative ideas in Alzheimer’s
and blindness research; allows scientists to gather preliminary
evidence so larger grants can be received from NIH or industry
BrightFocus
Bruner Foundation
How to use logic models for philanthropy
Logic Models
Burroughs Wellcome
Fund
The Burroughs Wellcome Fund's grantmaking strategies
support biomedical scientists at the beginning of their
careers and areas of science that are poised for significant
advancement but are currently undervalued and underfunded
Burroughs Grant
Program
Cancer Research
Institute
Funds the full spectrum of research from basic science
to clinical trials; mechanisms from fellowships to consortia;
supports and hosts conferences and meetings; includes
partnerships with other nonprofits
CRI Strategy
Centers for Disease
Control and
Prevention
National Program of Cancer Registries
CDC Cancer
Registries
Children’s Tumor
Foundation
Disease registry
Tumor Foundation
Registry
Children’s Tumor
Foundation
Young investigator awards
CTF Young
Investigator
43
APPENDIX 2
Ellison Medical
Foundation
Grant focus on basic biology of aging; giving scientists the
freedom, flexibility and resources to take risks; senior scholar
award; new scholar award (awards granted in first three
years after receiving doctoral degree); neuroscience award;
conferences and workshops
Ellison New Scholar
Faster Cures
The Research Acceleration and Innovation Network (TRAIN);
nonprofit, industry, investor partnerships
TRAIN
Faster Cures
Collaboration Inventory
TRAIN Inventory
Grantmaking
Strategies
Faster Cures
A center of the Milken Institute; goal is to save lives by
speeding up and improving the medical research system
Faster Cures
Brings scientists from the Food and Drug Administration
(FDA), industry and academia together to collaborate and
improve the drug development and regulatory process for
medical products
Critical Path
Fondation Leducq
International collaborations in cardiovascular and neurovascular
disease; funds Transatlantic Networks of Excellence
Leducq
Foundation Fighting
Blindness
Strategic Plan
Cystic Fibrosis
Foundation
Cystic Fibrosis Foundation Therapeutics, Inc., subsidiary to
advance drug development
CFFT
Organization 2016 goal is to add 10 new human clinical trials
to translational research portfolio; focus is to identify new
therapies; improve diagnoses; provide education, awareness,
support; attract broad support
Damon Runyon
Cancer Research
Foundation
Four programs aimed at encouraging and advancing the work
of early career cancer researchers
Damon Runyon Early
Career
Physical Therapy
Foundation
Funds and publicizes physical therapy research that determines
the scientific basis and value of services intended to optimize
physical functioning by physical therapists, and to develop the
next generation of researchers
Scientific Review
Committee
Department of Health
and Human Services
Funding of demonstration projects and evaluation of
telehealth services, direct services provision, Medicare
payment for telehealth services, and regulation of remote
devices and services
Telehealth Report
Georgia Regents
University Augusta
Medical College of Georgia Center for Telehealth
Georgia Telehealth
Gerber Foundation
Novice researcher program
Donaghue Foundation
Promotes knowledge uptake; builds networks and
collaborations; funds a diverse portfolio of projects on
mechanisms of disease and improving clinical treatments;
public health initiatives to prevent illness
Donaghue Mission
Gerber Novice
Program
Grand Challenges in
Global Health
Grand Challenges is a family of initiatives fostering innovation
to solve key global health and development problems
Grand Challenges
Clinical research career ladder funding from high school to
senior investigators
Doris Duke Goals
Health Research
Alliance
Considers the future of biomedical research in light of major
changes in funding streams for research within academic
health centers, considers the role of private funders in training
the next generation of biomedical scientists, shares best
practices for grantmaking
HRA
Circle of Service
Foundation
Provides community services and education; funds medical
research by invitation only
Circle of Service
Citizens United for
Research in Epilepsy
(CURE Epilepsy)
Provides seed grants for novel research in the following areas:
prevention, cure, elimination of treatment side effects, reversal
of deficits caused by seizures; special program in Sudden
Unexpected Death in Epilepsy
CURE Epilepsy
Research
Conquer Cancer
Foundation
Funds breakthrough cancer research conducted by physicianscientists at all career stages
Conquer Cancer
Methodology
Council on
Foundations
Comparison of grant-making strategies
Critical Path Institute
Doris Duke Charitable
Foundation
44
45
APPENDIX 2
Kavli Foundation
Astrophysics, cosmology, nanoscience, neuroscience and
theoretical physics; programs include Frontiers of Science,
science meetings, science communication, science journalism,
endowed professorships and prizes for achievement
Kavli
Helmsley Programs
Klarman Family
Foundation
Funds grants in the biological basis of health and illness, with
a special interest in psychiatric diseases;.other areas of focus
are to strengthen the Jewish community and expand access
to services and opportunities in Boston
Klarman Focus
Supports people, not projects; solves difficult, long-range
questions
HHMI
Leukemia &
Lymphoma Society
LLS Mission
The Association’s 2010-2014 research strategic plan
priorities are to stimulate the hydrocephalus research
ecosystem; identify and improve clinical best practices;
improve understanding of etiology; they fund seven young
investigators/year
Hydrocephalus
young investigators
Areas of research focus include diagnosis and treatment
of blood cancers; funding academic research; therapy
acceleration program; funding special focused initiatives;
developing new therapies through partnerships with
pharmaceutical companies and venture capitalists
LIVESTRONG
Foundation
Patient-Centered
Care
Funds research to find a cure for type I diabetes; the focus
is on funding novel projects to accelerate a cure and inform
understanding of the disease by a related mechanism of
action
Iacocca Grants
Original model of patient-centered cancer care in partnership
with the Dell Medical School; an innovative enterprise
designed by cancer patients and survivors to deliver patientcentered care, the best teaching practices and collaborative
research
LUNGevity
Lungevity
commitment
A blueprint for transforming prevention, care, education and
research to relieve pain in America
Blueprint for
Relieving Pain
Funds early-career and established researchers; scientific
focus on early detection and targeted treatment, including
customized genetic intervention
Institute of Medicine
A guide for immediate and precise action to reduce the
burden of all forms of chronic illness through the development
and implementation of cross-cutting strategies to help
Americans live well
Living Well With
Chronic Disease
Lymphoma Research
Foundation
Strategy to support young investigators; funds accomplished
researchers who will accelerate development of therapeutics
and answer fundamental questions; pursues research in
disease-specific focus areas; creates activities and resources
to enhance research endeavor
Lymphoma
Mentoring
International Science
of Team Science
Conference
Strategies for facilitating team science
Advancing Team
Science
March of Dimes
Starter Scholar research awards (independent researchers no
more than eight years post-doc)
March of Dimes
Grants
Funds the range of projects from early exploratory research
to proof of concept clinical trials to regulatory approval and
reimbursement; international funder; has training and earlycareer development grants
Detailed strategic plan available, with 25 specific priorities;
three main areas of scientific plan: prevention, diagnosis and
staging, and treatment
MRA Strategic Plan
Juvenile Diabetes
Research Foundation
Melanoma Research
Alliance
Michael J Fox
Foundation
Speeding treatments and cure for Parkinson’s disease
Fox Foundation
Health Resources in
Action
The Medical Foundation, a division of HRiA is a grantmaking
services company
HRIA
Heart Rhythm Society
Funds post-doctoral research fellowships
HRS Postdocs
Helmsley Charitable
Trust
Applications for grants are by invitation only; Trust has
partnerships with grantees; focuses on basic medical
research, IBD and Crohn’s disease, rural health care, type 1
diabetes and building the biomedical research infrastructure
Howard Hughes
Medical Institute
Hydrocephalus
Association
Iaccoca Family
Foundation
Institute of Medicine
46
JDRF Grant
Descriptions
47
APPENDIX 2
48
MPN Research
Foundation
Grant program to build on new discoveries; accepts proposals
in five focus areas; challenge program
MPN Strategy
North American
Association of Central
Cancer Registries
Standards for registry operations, etc.
NAACCR
Ms. Foundation for
Women
Effective strategies for grantmaking with equity and inclusion
Collaborative Fund
Model
NAACCR Strategic Management Plan
NAACCR Strategic
Plan
Mt Sinai
North American
Association of Central
Cancer Registries
Mt Sinai Health Care
Foundation
Academic medicine and bioscience, health policy
MMRC
Pancreatic Cancer
Action Network
A comprehensive strategy that includes early-career scientist
grants
PanCan Strategy
The Multiple Myeloma Research Consortium (MMRC):
Advancing Promising Treatments for People with Multiple
Myeloma
Multiple Myeloma
Research Foundation
Parent Project
Muscular Dystrophy
Global Investment For Therapeutics to End Duchenne
(GIFTED) program
GIFTED
Multiple Myeloma
Research Foundation
Genomics initiative and tissue bank
MMRF Tissue Bank
Parkinson’s Disease
Foundation
PDF Funding
National Center
for Advancing
Translational Sciences
Catalyzes the generation of innovative methods and
technologies to enhance the development, testing and
implementation of diagnostics and therapeutics
NCATS
Invests in teams at leading research centers (long-term
support for basic, translational and clinical research); supports
international research grants program (advance knowledge of
Parkinson’s), mentored fellowships, training opportunities and
career development grants
National Center for
Complementary and
Alternative Medicine
NCCAM’s current strategic plan, Exploring the Science of
Complementary and Alternative Medicine: Third Strategic Plan
2011–2015, presents a series of goals and objectives to
guide NCCAM in determining priorities for future research on
complementary health approaches
NCCAM Strategic
Plan
Patient Research
Connection:
PI-Connect.
Immune deficiency patient-powered research network
PI-Connect
The mission is to provide a united voice for people with
chronic diseases and disabilities
NHC
Framework to guide funding of comparative clinical
effectiveness research that will give patients and those who
care for them the ability to make better-informed health
decisions
Research Agenda
National Health
Council
Patient-Centered
Outcomes Research
Institute (PCORI)
National Prevention,
Health Promotion and
Public Health Council
Metrics for a prevention-oriented society where all sectors
recognize the value of health for individuals
National Prevention
Strategy
Pershing Square Sohn
Cancer Research
Institute
Prize for young investigators; Fellowship with Damon Runyon
Pershing Square
Initiatives
National Psoriasis
Foundation
Strategic goal #1: Accelerate discovery to cure psoriatic
disease
Psoriasis Strategic
Plan
Pew Charitable Trusts
Early career development through Scholars program
Pew Biomedical
Scholars
Nature
Research funding should strive for a balanced portfolio
Grand Challenge
Educational fellowships; resident research grants and prizes;
translational research fellowships
PSIF Funding
Programs
New York Stem Cell
Foundation
Post-doc fellowship program; early-career investigators
NYSCF Innovators
Physicians’ Services
Incorporated
Foundation
Rita Allen Foundation
Young leaders in science and social innovation awards; the
Foundation identifies other organizations to support
Rita Allen Grants
49
APPENDIX 2 | Organizations to Find a Cure
Appendix |
3
Research Advisory Committee
50
Simons Foundation
Mathematics and Physical Sciences grant program; multiinstitutional collaborative programs in life sciences; autism
research initiative; education and outreach
Simons Foundation
Susan G. Komen
Komen supports a range of grants from training to large
promise grants; they are transitioning the program from basic
science grants to treatment, early detection and prevention;
Komen supports investigator-initiated projects, sponsored
programs, international research grants and international
community health grants
Komen Grant
Program
Susan G. Komen
Funding breast cancer projects that have the potential to
advance the field and have an impact on patients as rapidly as
possible
Research
Accomplishments
TCC Group
How to design strategic grantmaking programs that make a
high impact
Funding for Impact
The William and Flora
Hewlett Foundation
Outcome focused grantmaking: a hard-headed approach to
soft-hearted goals
Outcome Focused
Grantmaking
V Foundation for
Cancer Research
Scholar program for young investigators
V Foundation
Funding
W. Garfield Weston
Foundation
Canadian organization focused on education, land
conservation, science in Canada’s North, neuroscience
translational research and other trustee-initiated grants
Weston Mandate
W. M. Keck Foundation
Grants open to early career investigators; undergraduate
education program
Keck Grant program
Robert A. Colbert, MD, PhD
Dr. Colbert is Chief, Pediatric Translational Research Branch
(PTRB), Deputy Clinical Director, National Institute of Arthritis
and Musculoskeletal and Skin Diseases. The Colbert lab aims
to understand the pathogenesis of chronic inflammation and
its impact on structural remodeling of bone in spondyloarthritic
diseases such as ankylosing spondylitis. Before coming to
NIAMS, Dr. Colbert served as the director of the Division
of Rheumatology at Cincinnati Children’s Hospital Medical
Center of the University of Cincinnati College of Medicine. The
PTRB is researching the pathogenesis of spondyloarthritis
and related disorders, including ankylosing spondylitis,
particularly with childhood onset. As chief of the PTRB, Dr.
Colbert is developing a research program that will utilize
animal models, coupled with patient-oriented translational
studies, to characterize the mechanisms responsible for
initiating and promoting inflammation and dysregulated bone
formation in these disorders.
Joseph Craft, MD
Dr. Craft is Paul B. Beeson Professor of Medicine and
Chief of the Section of Rheumatology, and Professor of
Immunobiology, at the Yale University School of Medicine.
At Yale, he teaches graduate and medical students, and
directs a research laboratory devoted to understanding
T lymphocyte differentiation and function in normal
and autoimmune responses. Dr. Craft is Director of the
Investigative Medicine Program at Yale, a unique program
designed to provide PhD training for physicians. He is
former chair of the Immunological Sciences Study Section
at NIH, and a former Pew Scholar in the Biomedical
Sciences. He is a co-founder of L2Diagnostics, a company
in New Haven formed in partnership with Yale University
and devoted to discovery of new diagnostics in vectorborne diseases and of targets for vaccine development.
Helen Emery, MBBS
Dr. Emery currently serves as a member of the Arthritis
Foundation’s National Board of Directors; Chair of the
Research Advisory Committee; Chair, Research and
Strategic Planning Task Team; and a member of the Great
West Region Board of Directors. She is Professor Emeritus
of Pediatrics at the University of Washington and Seattle
Children’s Hospital. Her academic focus has been the
education of residents, fellows and community physicians, as
well as improving the outcomes of children with rheumatic
diseases through application of basic and translational
research. Dr. Emery remains committed to finding a cure
for both the children she sees and the millions of others
affected by the over 100 forms of arthritis.
Farshid Guilak, PhD
Dr. Guilak is the Laszlo Ormandy Professor and Vice-Chair
for Research in the Department of Orthopaedic Surgery
at Duke University Medical Center and is the Director of
Orthopaedic Research, and a longtime and very active
volunteer for the Arthritis Foundation. Dr. Guilak’s research
focuses on the study of osteoarthritis. He leads a research
group of nearly 40 students, post-docs and staff. His
laboratory has used a multidisciplinary approach to
investigate the role of biomechanical factors in the onset and
progression of osteoarthritis, as well as the development of
new pharmacologic and stem-cell therapies for this disease.
He is the Editor-in-Chief of the Journal of Biomechanics,
Associate Editor for Osteoarthritis & Cartilage, and serves
on the editorial boards of seven other journals. He has won
numerous national and international awards for his research
and mentorship.
51
Research Advisory Committee
APPENDIX 3
Linda J. Sandell, PhD
Dr. Sandell is the Mildred B. Simon Professor and Director
of Research in the Department of Orthopaedic Surgery
and Director of the Center for Musculoskeletal Biology and
Medicine at Washington University in St. Louis. She has been
a leader in the field of orthopaedic research, pioneering the
use of molecular biologic techniques, protein biochemistry,
large screening technologies, microscopy and computational
biology to study cell responses to cartilage cell injury and
the regulation of gene expression in connective tissues. Her
recent focus is on the areas of genetics and osteoarthritis. Dr.
Sandell has authored more than 200 publications, in addition
to three books and seven patents. She has been President of
the Orthopaedic Research Society, the Histochemical Society
and the Society for Matrix Biology. In 2010, she received
the Women’s Leadership Award from the Orthopaedic
Research Society and is currently Director of the OARSI OA
Biomarkers Global Initiative and Immediate Past President of
the Osteoarthritis Research Society International.
David Shuey, MS
Mr. Shuey is Chair Emeritus of the Arthritis Foundation’s
National Board of Directors, and has served in numerous
posts and positions as a volunteer for the Arthritis Foundation,
both locally and nationally. During his tenure as Chair, Mr.
Shuey biked coast-to-coast to honor his mother, and raise
money and awareness for the Arthritis Foundation. Mr. Shuey
is Executive Vice President and North America Practice
Leader for The Willis Group, a leading risk and insurance
management firm. His clients range from early-stage
R&D companies to large pharmaceutical firms. Mr. Shuey
has expertise in therapeutics, medical devices, generics,
nutraceuticals, consumer products, contract research
organizations, laboratories and contract manufacturing.
52
Chris Smith, MBA
Mr. Smith is Chief Executive Officer of the Arthritis
Foundation’s Great Lakes Region. The region covers five
states: Michigan, Ohio, Kentucky Pennsylvania and West
Virginia. Today the Great Lakes Region carries out the mission
of the Arthritis Foundation by advocating for people who
have arthritis, offering programs and services that improve
the lives of millions of people of all ages diagnosed with
arthritis, as well as investing in cutting-edge research. Having
built his career in nonprofit management, Mr. Smith is in his
30th year working for volunteer health agencies. As CEO,
Mr. Smith serves on the Executive Cabinet for the national
Arthritis Foundation with shared responsibility for setting
policy, creating strategies and making recommendations on
how best to carry out the strategic plan for the Foundation.
Kelli Thompson, Esq.
Ms. Thompson is an attorney at Baker, Donelson, Bearman,
Caldwell & Berkowitz, PC; she has practiced law for 25 years.
She has significant experience in franchise law and litigation,
business litigation and employment law and litigation. Ms.
Thompson was diagnosed with rheumatoid arthritis in
October 2001, and her husband was diagnosed with psoriatic
arthritis in August 2002. Both families have a strong history
of autoimmune diseases. She became involved with her local
office of the Arthritis Foundation in 2006 and became a
National Board of Directors member in 2011.
Rocky S. Tuan, PhD
Dr. Tuan is Distinguished Professor; Director, Center for
Cellular and Molecular Engineering; Arthur J. Rooney, Sr. Chari
and Executive Vice Chairman, Department of Orthopaedic
Surgery;
Associate Director, McGowan Institute for
Regenerative Medicine; Director, Center for Military Medicine
Research; Professor, Departments of Bioengineering and
Mechanical Engineering and Materials Science at the
University of Pittsburgh. Dr. Tuan has published more than
420 research papers, has lectured extensively, and is currently
Editor of the developmental biology journal, BDRC: EMBRYO
TODAY, and Founding Editor of STEM CELL RESEARCH
AND THERAPY. Dr. Tuan directs a multidisciplinary research
program that focuses on orthopaedic research as a study of
the biological activities that are important for the development,
growth, function and health of musculoskeletal tissues, and
the translation of this knowledge to develop technologies
that will regenerate and/or restore function to diseased and
damaged skeletal tissues.
W. Hayes Wilson, MD
Dr. Wilson is Chair of the Division of Rheumatology at Piedmont
Hospital in Atlanta. His special interests are in systemic lupus
erythematosus, rheumatoid arthritis and scleroderma. He has
been a longtime volunteer for the Arthritis Foundation, serving
the Georgia office, Southeast Region, and the National Board
of Directors.
53
Appendix |
4
Research & Strategic Planning Task Team
Rowland W. Chang, MD, MPH
Dr. Chang is currently the Vice Chair of the Arthritis
Foundation’s National Board of Directors and a member
of the Greater Chicago Leadership Council; he also serves
on several task teams and committees, both regionally and
nationally. He is Professor of Preventive Medicine, Medicine
(Rheumatology), and Physical Medicine and Rehabilitation,
Director of the Institute for Public Health and Medicine, and
Senior Associate Dean for Public Health at Northwestern
University Feinberg School of Medicine. Dr. Chang is noted for
1) his clinical epidemiologic/health services research focused
on the outcomes of rehabilitation and orthopaedic surgical
treatments for persons with arthritis, and 2) his research on
the determinants (most notably physical activity/sedentary
behavior) of arthritis-associated functional limitation and
disability in clinical and community populations.
Helen Emery, MBBS
Dr. Emery currently serves as a member of the Arthritis
Foundation’s National Board of Directors; Chair of the
Research Advisory Committee; Chair, Research and Strategic
Planning Task Team; and a member of the Great West Region
Board of Directors. She is Professor Emeritus of Pediatrics at
the University of Washington and Seattle Children’s Hospital.
Her academic focus has been the education of residents,
fellows and community physicians, as well as improving
the outcomes of children with rheumatic diseases through
application of basic and translational research. Dr. Emery
remains committed to finding a cure for both the children she
sees and the millions of others affected by the over 100 forms
of arthritis.
54
William Mulvihill, MEd
Mr. Mulvihill is Chair Emeritus of the Arthritis Foundation’s
National Board of Directors, and over the years has served
innumerable roles, both locally and nationally. He was previously the Executive Vice President of the University of
Cincinnati Foundation, where he successfully completed
the Proudly Cincinnati $1 billion campaign. Mr. Mulvihill
currently is Executive Director, University of Cincinnati Presidential Bicentennial Commission, overseeing the planning
and execution of the university’s Bicentennial Celebration in 2019. Diagnosed with rheumatoid arthritis in 1972,
Mr. Mulvihill has dedicated nearly 40 years to improving the
lives of people with arthritis through his volunteer efforts
with the Arthritis Foundation and the Alliance for Lupus
Research. He is a strong proponent of working with others
to extend the Foundation’s reach and make a difference in
the quality of life for many.
Susana Serrate-Sztein, MD
Dr. Serrate-Sztein is the National Institute of Arthritis and
Musculoskeletal and Skin Diseases’ (NIAMS) liaison with
the Arthritis Foundation. She is Director of the Division of
Skin and Rheumatic Diseases at NIAMS, overseeing a
large portfolio of grants and contracts dealing with etiology,
pathogenesis, diagnosis, treatment and prevention of skin
and rheumatic diseases. Before joining the National Institutes of Health, Dr. Serrate-Sztein was Assistant Professor,
Department of Pathology, Uniformed Services University of
the Health Sciences, where she studied cytokine regulation
of cell-mediated immune responses.
David Shuey, MS
Mr. Shuey is Chair Emeritus of the Arthritis Foundation’s
National Board of Directors, and has served in numerous
posts and positions as a volunteer for the Arthritis Foundation,
both locally and nationally. During his tenure as Chair, Mr.
Shuey biked coast-to-coast to honor his mother, and raise
money and awareness for the Arthritis Foundation. Mr. Shuey
is Executive Vice President and North America Practice
Leader for The Willis Group, a leading risk and insurance
management firm. His clients range from early-stage
R&D companies to large pharmaceutical firms. Mr. Shuey
has expertise in therapeutics, medical devices, generics,
nutraceuticals, consumer products, contract research
organizations, laboratories and contract manufacturing.
Chris Smith, MBA
Mr. Smith is Chief Executive Officer of the Arthritis
Foundation’s Great Lakes Region. The region covers five
states: Michigan, Ohio, Kentucky Pennsylvania and West
Virginia. Today the Great Lakes Region carries out the mission
of the Arthritis Foundation by advocating for people who
have arthritis, offering programs and services that improve
the lives of millions of people of all ages diagnosed with
arthritis, as well as investing in cutting-edge research. Having
built his career in nonprofit management, Mr. Smith is in his
30th year working for volunteer health agencies. As CEO,
Mr. Smith serves on the Executive Cabinet for the national
Arthritis Foundation with shared responsibility for setting
policy, creating strategies and making recommendations on
how best to carry out the strategic plan for the Foundation.
Walter Smith, MS
Dr. Smith is currently a member of the Arthritis Foundation’s
National Board of Directors and secretary of the Heartland
Region Board of Directors. He is CEO of Confluence Life
Sciences, Inc., a biotech company based in St. Louis. He
joined Confluence after spending 28 years with pharmaceutical companies Searle, Pharmacia and Pfizer where he
was VP of Research and Global Head for the Inflammation/
Immunology Therapeutic Area. Dr. Smith has led projects
that have produced eight clinical candidates, six Investigational New Drug applications and one New Drug Application.
He has published more than 29 full-length manuscripts in
peer-reviewed journals. He is a member of the American
Thoracic Society and the American Society for Pharmacology and Experimental Therapeutics.
Janalee Taylor, CPNP
Ms. Taylor is currently a member of the Executive Committee of the Arthritis Foundation’s National Board of Directors
and has volunteered extensively for the Foundation at the
local, regional and national levels. She is a Certified Pediatric Nurse Practitioner and the Associate Clinical Director
for the Division of Rheumatology at Cincinnati Children’s
Hospital Medical Center. Ms. Taylor has been in pediatric
rheumatology for 33 years, and is one of the co-leaders
of the JIA and SLE Quality Improvement Team at Cincinnati Children’s Hospital. Specific areas of interest include
outcomes in pediatric rheumatic disease, psychosocial
aspects of disease and self-management in chronic disease.
She recently co-authored an evidence-based guideline for
self-management in pediatric chronic disease.
55
Appendix |
5
Acknowledgments
The Arthritis Foundation appreciates the contributions of the following subject matter experts in the
development of the Scientific Strategy 2015-2020.
Johnathan Riley
Brigham and Women’s Hospital
Arthritis Society
Jennifer Madans
Andrew Robertson
Kelli Allen
Vincent Del Gaizo
Centers for Disease Control and Prevention
University of North Carolina, Chapel Hill
Friends of Childhood Arthritis and Rheumatology Research
Alliance (CARRA)
Michele J. Maiers
Victoria Ruffing
Northwestern Health Sciences University
Rheumatology Nurses Society
Lara Mangravite
Laura Schanberg
SAGE Bionetworks
Childhood Arthritis and Rheumatology Research Alliance
(CARRA)
Timothy G. Beukelman
(CARRA)
George Dodge
Carter Blakey
Sherine E. Gabriel
United States Department of Health and Human Services/Office
of the Assistant Secretary for Health/Healthy People
Mayo Clinic
Helene Belisle
Arthritis National Research Foundation
Marc Boutin
National Health Council
S. Louis Bridges Jr.
University of Alabama at Birmingham
Grant Cannon
United States Department of
Veterans Affairs
Robert H. Carter
56
Elena Losina
Orthopaedic Research Society
Seth Ginsberg
Tibor Glant
Rush University
Charles G. Helmick
Michael Henrickson
Cincinnati Children’s Hospital
Medical Center
Steve Hoffmann
Eryn Marchiolo
Rheumatology Research Foundation
Phillip J. Mease
Seattle Rheumatology Associates
Kaleb Michaud
Arthritis Internet Registry (AIR)
Ted Mikuls
University of Nebraska Medical Center
Esi Morgan DeWitt
Suzanne Schrandt
Patient-Centered Outcomes Research Institute (PCORI)
Jasvinder Singh
Melissa Stevens
FasterCures
Paul Thompson
University of Massachusetts
Pediatric Rheumatology Care & Outcomes Improvement
Network (PR-COIN)
Aricca Van Citters
Allison Milutinovich
Carl F. Ware
Department of Defense
Sanford-Burnham Medical Research Institute
Dartmouth College
National Institutes of Health
Foundation for the National Institutes
of Health
Karen Chesbrough
Sandy Jones
Rachel Myslinski
Mary Wheatley
Foundation for Physical Therapy
American College of Rheumatology
Timothy Coetzee
Elizabeth W. Karlson
Peter A. Nigrovic
James Witter
National Multiple Sclerosis Society
Bringham and Women’s Hospital
(CARRA)
David Covall
David Karp
Northside Arthritis Center
W. Benjamin Nowell
University of Maryland, Baltimore County
Alexis Colvin
Salahuddin Kazi
United States Tennis Association
University of Texas Southwestern Medical Center
Jeffrey R. Curtis
Virginia Byers Kraus
Osteoarthritis Research Society International (OARSI)
Jennifer Cutie
Gayle Lester
Viola Medica, Inc.
Yelena Yesha
Alexis Ogdie-Beatty
University of Pennsylvania
David S. Pisetsky
Thank you to the Arthritis Foundation staff and
volunteers who provided support in the production of
this document.
United States Bone and Joint Initiative (USBJI)
Ronald Poropatich
University of Pittsburgh
57
Scientific Pillar #1:
Scientific Pillar #1:
Amanda Niskar, DrPH, MPH, BSN, National Scientific Director
1330 West Peachtree Street NW, Suite 100, Atlanta, GA 30309
58
www.arthritis.org
59
www.arthritis.org/science
60

Arthritis Foundation Scientific Strategy

Transcription

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