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/
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