DS-Connect®: The Down Syndrome Registry


DS-Connect®: The Down Syndrome Registry

“The new registry provides an important resource to individuals with Down syndrome and their families,” said Yvonne T. Maddox, former deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry.  “The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.”

Join the Registry


Professional Portal-Now Live

Researchers, clinicians and other professionals can access de-identified aggregate data in DS-Connect® to identify target populations for study or trial planning or recruitment. You can also contact the DS-Connect® Coordinator to communicate with registrants on your behalf regarding potential candidacy for clinical trials and research studies.

Set up a Professional Account


Explore the Data

Remember, this is your registry and you’re in charge of the information in it. Check out how to explore the information you and others have provided to learn more about Down syndrome and its impact on other community members. Log into your account today and start exploring the data.


Registry Updates

Get information on the latest registry-related news, including ongoing efforts to advance research discoveries, develop treatments, and improve the quality of life for people living with Down syndrome.

Download the Flyer

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The Down Syndrome Registry