Inspiring Better Health

Down Syndrome Registry

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Down Syndrome Registry
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World Down Syndrome Day 2017 – 21st March

Since 2011, the National Institute of Child Health and Human Development leads an annual Down Syndrome Consortium, a public-private sector collaboration that provides a forum for promoting the Down Syndrome Directions: NIH Research Plan on the Syndrome and fosters the exchange of information on biomedical and bio-behavioral research.

The Consortium has launched its Down syndrome registry, DS-Connect, which facilitates contacts and information sharing among people with the syndrome and their relatives, researchers and support groups, safely and confidentially. Parents can find treatment centers and information that helps them take care of their loved ones. Researchers are able to find patterns and similarities in patients, leading to better clinical trials and treatment options.