Video Text Alternative: Inside the NICHD: Making Down Syndrome Research a Priority
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Inside the NICHD
Making Down syndrome a priority
Eunice Kennedy Shriver National Institute of Child Health and Human Development
|Video fades to camera view on Dr. Yvonne Maddox.
Banner Text: Yvonne Maddox, Ph.D.
|Dr. Yvonne Maddox: And so about 5 years ago we really launched a full-fledged effort to look more closely not only at the causes of Down syndrome—we’re very clear that it’s, you know, the extra chromosome, chromosome 21, that causes Down syndrome—but there are so many comorbidities associated with Down syndrome that we felt that we could do more in the community looking at, you know, how does heart defect develop in these children, these individuals? What are the issues associated with sleep apnea? What are the issues associated with the consistent sort of increase in cognitive demise and the dementia associated with these children?|
So what we decided to do because there were so many groups that really were wedded to this area of doing more in Down syndrome, we established a consortium of advocates and advocates’ groups and professional societies to help us think through prioritization of where we should go in our research efforts in Down syndrome. This consortium has worked out beautifully, and I think one of my proudest moments was when working through the consortium we established the first ever national Down syndrome registry. That has gone on now to be a major recruiting tool for getting individuals and their families to sign up for the potential of participating in clinical trials so that we can better look at how we might treat some of the comorbidities associated with Down syndrome.
Last Updated Date: 07/29/2014
Last Reviewed Date: 07/29/2014