Sophie`s Science Project

SOPHIE’S
SCIENCE
PROJECT
What is Medical
Research?
Sophie’s Science Project — A Note for Parents
we must both understand
In order to cure the illnesses that affect children,
s caring for children often
the causes and develop new treatments. For this reason, doctor
se in research studies. Medical research enables us to understand
Celiac
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es to Disea
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rights and interests of indiautonomy, and research “can never take precedence over the
agree to participate in
words, parents and children who
vidual research subjects.” In other
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“assent” means is that
What
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ren
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and barley is easierpar avoiding wheat, rye,
donuts, and bread. Thus,
the
sign
ing gluten-free pizza,
also
to
asked
are
they
cases
many
In
study.
the
in
ipate
child agrees to partic
rs. initially appea
cally developed for their
ent’s consent document or sign a special “assent form” that is specifi
child’s sig al signature is the legal signature, the
level of understanding. While the parent
rt groups
t suppo
larges
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oldest
s
ry’
count
the
of
one
have
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n,
Bosto
s and are
ital
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ildren’s Hosp
At Ch
been included in the consen
nature is additional evidence that they have es. four times a year and
en with celiac disease and their famili We publish a newsletter
for childr
willing participants in the research.
DVD, “Raising
ies. We also have produced an educational
organize educational and social activitto
the inand
ch
resear
al
medic
about
en
childr
e
educat
Project
e
Scienc
encouraged you to seek
We created Sophie’s
Gluten-Free Life.” If this book has
your Celiac Child: Guidelines for aren
undera better
will gainospita
this book
who read
and teens
t process. Child
l.org/celiac.
d consen
rensH
formeinform
Child
www.
te
websi
own
our
out
check
please
ation,
out more
we do with the information
standing of how doctors and scientists work together, what
lucky to enlist
ed consent.” We were
it truly means to give “inform
we collect, and whatJoe
who are expert in proteam
wife
and
nd
husba
, a
Staton
e
Hilari
and
thank
to
We would like writer and artist team of Hilarie and Joe Staton, who have developed other
the superb
ity, and hard
nsight, creativ
, for their ialso
h chronic illness
s for children wit
tional comic
ate to have
fortun
ducing educa
are
We
tal.
Hospi
s
ren’
Child
n
Bosto
for
books
educational comic
to thank Janis Arnold, Tracy Keegan, and
ping this project. We would also like
in develo
workcolleag
elphia and Cincinnati Children’s Hospital,
ues from Children’s Hospital of Philad
t.
projec
comics, we hope both
Warman for their review of the contents and input into theional
Karen
parents and other experts as advisors. As with our other educat
informative.Alan M. Leichtner, md
parents and children find Sophie’s Science Project both fun and
Athos Bousvaros md, mph
Athos Bousvaros md, mph
Susan Kornetsky, mph
a Dedicated to Marina Keegan who helped many children with celiac disease learn about gluten-free living.
Consultants:
Robert W. Frenck, jr, md
Cincinnati Children’s Hospital Medical Center
Editor: Athos Bousvaros
Writer: Hilarie Staton
Susan Kornetsky, mph
Artist: Joe Staton
Boston Children’s Hospital
Design & Production: Victoria Ettlinger
Skip Nelson, md
U.S. Food and Drug Administration
Letterer: Janice Chiang
Lois Russell
Colorist: Matt Webb
Research Subject Advocate
Mark S. Schreiner, md
Proofreader: Maria Goudiss
The Children’s Hospital of Philadelphia
2014 Children’s Hospital Boston
© Boston Children’s Hospital
©2015
R*E*M*E*M*B*E*R
*Research is the way we learn about the causes
and treatment of illnesses.
*There are different types of research. You may be
asked questions, or have a blood sample taken, or
you may be asked to try a new medication.
*If you decide not to be part of the research study,
you will still get medical care.
*You can ask questions about the research at any
time: before, during, or after you participate. Ask
the researchers what they hope to learn from the
study.
*Make sure you understand what you will need to
do for the research study. You might want to know
how many times you need to come to the clinic as
part of the study.
*Talk to your parents about the research before
you decide if you want to participate. Your opinion
is important.
*You can stop the research at any time. Just let
your parents and the researcher know.