| 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" (http://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
http://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
http://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
http://www.nih.gov/.
Resources:
Children and Clinical Studies,
http://www.childrenandclinicalstudies.nhlbi.nih.gov/
Database of clinical studies,
http://clinicaltrials.gov/
NHLBI Pediatric Heart Network,
http://www.pediatricheartnetwork.com//
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