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Sunday, October 28, 2012

National Down Syndrome Registry

The Global Down Syndrome Foundation just released the information that the National Institutes of Health is establishing a National Down Syndrome Patient Registry.

This is pretty exciting news as there is nothing like this for the Down syndrome community.

From the press release: The national registry will collect much needed medical information from people with Down syndrome, and connect people with Down syndrome and their families with scientists engaging in research that is of interest to those people and their families. The registry will be used to identify critical health trends, the most effective treatments and clinical trials for potential therapies.

People with Down syndrome or their families will be able to enter and update contact information and health history in an online, secure, confidential database. Participants can choose which information they would like to display, receive reminders about their own medical care and compare their medical information to that of other registrants confidentially and anonymously.

Those who give permission may be contacted by authorized clinicians and researchers to see whether they are interested in joining a research study.
 

From Michelle Sie Whitten, Executive Director of the GDSF, "Clearly if implemented and supported appropriately, this will be a huge game-changer regarding health outcomes for our children and adults with Down syndrome."

It doesn't say when the registry will be online, but hopefully soon! 

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1 comment:

Kerri said...

Thanks for the information. I have passed it off to a couple of friends who have children with DS. They are as excited about the potential of this registry!