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Photos: NIH Launches New Web Site for Parents on Medical Research Studies for Children
Date:10/6/2008

ipants' 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 r
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SOURCE NHLBI
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