Photos: NIH Launches New Web Site for Parents on Medical Research Studies fo...(esearch study can affect the entire ...),Health

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-- 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."

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/

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.
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