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NHLBI Launches Web Site for Parents on Medical Research Studies for Kids

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Brief Description:

A new National Heart Lung and Blood Institute website offers parents and health care providers an insider’s guide to children’s medical research.


Akinso: A new National Heart Lung and Blood Institute website offers parents and health care providers an insider’s guide to children’s medical research. The website, Children and Clinical studies, 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. Ms. Victoria Pemberton, a Clinical Trials specialist at the NHLBI, talks about the purpose of the website.

Pemberton: The site was developed because we realized that parents, families, even health care professionals in many ways did not understand what it meant to be in a clinical trial, especially for a child to participate in clinical research.

Akinso: In June 2008, the main 10 minute video earned three Telly Awards, including a sliver in education, which is the highest award. The Tellys honor outstanding local, regional, and cable TV commercials and programs; film and video productions; web ads, videos and films. Ms. Pemberton points out some of the features that the website offers.

Pemberton: I think that the website combines a couple of features. We try to put in very simple language — the website is at an average sixth grade reading level. So then even older children might be able to get on it and understand it. The second component, there are graphics there. And I think the graphics help to explain some of the more technical things. We’ve tried to put on definitions — where definitions are required. And the fourth thing, are the videos clips. And I think the video clips are a big draw because parents like seeing other people like themselves in situations similar to their own. Talking about their struggles, their decision, how did they make a decision to participate or not participate. I think parents are reassured by some of the things that they hear there.

Akinso: 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. Dr. Gail Pearson, an NHLBI pediatric cardiologist, believes that this website will serve as some sort of educational tool for the public when it comes to clinical research.

Akinso: In general, many members of the public aren’t really quite sure what research is or what it means be in clinical research. And I think this is an important message that NHLBI and NIH can get out generally to educate the public not so much about results of specific studies but in this case about the importance of research in children— the safeguards that are available and just the nuts and bolts of the process.

Akinso: Ms. Pemberton hopes that this new resource will help parents and others learn more about how clinical studies are conducted in children.

Pemberton: So we’d like to educate the public, health care professionals. We’d like to get the word out to trainees, people who are in medical school, nursing school, those who are interested in research. So I think that’s pretty much the world.

Akinso: If you would like to check out the website, visit www.childrenandclinicalstudies/ This is Wally Akinso at the National Institutes of Health, Bethesda, Maryland.

Date: 1/09/2009

Reporter: Wally Akinso

Sound Bite: Dr. Gail Pearson, Ms. Victoria Pemberton

Topic: :  Children, Clinical Studies


This page was last reviewed on January 12, 2009 .
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