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Subject: NIH LAUNCHES NEW WEB SITE FOR PARENTS ON MEDICAL RESEARCH STUDIES
FOR CHILDREN

U.S. Department of Health and Human Services NATIONAL INSTITUTES OF HEALTH
NIH News National Heart, Lung, and Blood Institute (NHLBI) <http://
www.nhlbi.nih.gov/> Eunice Kennedy Shriver National Institute of Child
Health and Human Development (NICHD) <http://www.nichd.nih.gov/> National
Center for Research Resources (NCRR) <http://www.ncrr.nih.gov/> For
Immediate Release: Monday, October 6, 2008 

CONTACT: NHLBI Communications Office, 301-496-4236, <e-mail:
[log in to unmask]>

NIH LAUNCHES NEW WEB SITE FOR PARENTS ON MEDICAL RESEARCH STUDIES FOR
CHILDREN Award-winning video clips feature children, parents discussing
clinical studies
 
From asthma and cancer treatments to vaccines, research in children saves
lives and improves their health and well-being. A new Web site from the
National Institutes of Health (NIH), "Children and Clinical Studies"
<www.ChildrenAndClinicalStudies.nhlbi.nih.gov>, offers parents and health
care providers an insider's guide to children's medical research. The Web
site combines information about how clinical studies in youth are conducted
with award-winning video of children, parents, and healthcare providers
discussing the rewards and challenges of participating in research.
 
In June, the main 10-minute video earned three Telly awards, including a
silver (the highest award) in education. The prestigious Tellys honor
outstanding local, regional, and cable TV commercials and programs; film and
video productions; and web ads, videos and films.
 
"Clinical studies are essential to improving our understanding of how to
diagnose, prevent, and treat disease -- as well as how to stay healthy --
and this is true of children as well as adults," said Elizabeth G. Nabel,
M.D., director of NIH's National Heart, Lung, and Blood Institute, which
developed the Web site. "We hope this new resource will help parents and
others learn more about how clinical studies are conducted in children, so
they can make well-informed decisions about whether to enroll their child in
a study."
 
The Web site describes why research in children is important, how studies
are conducted, and what measures are taken to protect participants' safety
and privacy. NHLBI -- which supports pediatric research on asthma, heart
disease, sickle cell anemia, obesity, and other conditions -- developed the
Web site in collaboration with New England Research Institutes and Hands On
Productions. Additional support was provided by the NIH Foundation; NIH's
Eunice Kennedy Shriver National Institute of Child Health and Human
Development, and the National Center for Research Resources; and the
National Marfan Foundation.
 
"Children are not little adults - their bodies and their brains are still
developing," notes Renee R. Jenkins, M.D., president of the American Academy
of Pediatrics and professor, Department of Pediatrics and Child Health,
Howard University College of Medicine, who appears in the video. "A good
example of their unique research needs is understanding how medications
affect the developing child and adolescent, and clinical trials are the best
way to do that."
 
Research studies can enroll healthy children or children with specific
conditions. They can involve simple observations or health tests, such as
weight and height, or more complex tests, vaccines, or treatments for a
condition. 
 
In one of the Web site videos, a young teen enrolled in a study of
treatments for Fabry disease says that being in a research study is "going
to be worth it in the long run, because I'm helping myself and future
generations and people who have the disease now." Fabry disease is an
inherited condition that can cause severe pain, vision problems, kidney and
heart disease, and stroke. 
 
"Children and Clinical Studies" includes a list of questions for parents to
consider asking the research team when deciding whether to enroll their
child in a study. Other topics include:
-- How institutional review boards monitor studies for safety
-- Who's who on the research team
-- Important terms to know, such as informed consent and assent
-- How a child's participation in a research study can affect the entire
family
-- The rights of families enrolled in clinical studies
 
"It's perfectly natural for parents to be concerned about the risks and
benefits of enrolling their child in a research study," notes Gail Pearson
M.D., Sc.D., an NHLBI pediatric cardiologist who oversees the Pediatric
Heart Network. "They should know that there is almost no other time in a
child's life that they will have as many safeguards brought to bear on their
well being than when they are in a clinical trial." 
 
Gathering information is key for parents to feel comfortable, adds one
parent, whose daughter is participating in a study on a treatment for Marfan
syndrome, a hereditary condition that weakens connective tissue, often
leading to dangerous problems in the heart and blood vessels, as well as
bones and joints, eyes, and lungs. In the video, she suggests that other
parents "get the information [about the study] so you can make an honest
decision about what you're going to be doing. Your child is sick, and this
study may help, or it might not. But it may help someone, some day."

NCRR provides laboratory scientists and clinical researchers with the
resources and training they need to understand, detect, treat and prevent a
wide range of diseases. NCRR supports all aspects of translational and
clinical research, connecting researchers, patients, and communities across
the nation. For more information, visit <www.ncrr.nih.gov>.
 
NICHD sponsors research on development, before and after birth; maternal,
child, and family health; reproductive biology and population issues; and
medical rehabilitation.  For more information, visit the Institute's Web
site at <http://www.nichd.nih.gov/>.
 
NHLBI plans, conducts, and supports research related to the causes,
prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood
diseases; and sleep disorders. The Institute also administers national
health education campaigns on women and heart disease, healthy weight for
children, and other topics. NHLBI press releases and other materials are
available online at <www.nhlbi.nih.gov>.

The National Institutes of Health (NIH) -- The Nation's Medical Research
Agency -- includes 27 Institutes and Centers and is a component of the U.S.
Department of Health and Human Services. It is the primary federal agency
for conducting and supporting basic, clinical and translational medical
research, and it investigates the causes, treatments, and cures for both
common and rare diseases. For more information about NIH and its programs,
visit <www.nih.gov>.
--------------------------------
RESOURCES:
-- Children and Clinical Studies,
<www.ChildrenAndClinicalStudies.nhlbi.nih.gov>
-- Database of clinical studies, <http://clinicaltrials.gov/>
-- NHLBI Pediatric Heart Network, <http://www.pediatricheartnetwork.com/>
  
##

This NIH News Release is available online at:
<http://www.nih.gov/news/health/oct2008/nhlbi-06.htm>.

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