Down Syndrome Consortium and DS-Connect®: The Down Syndrome Registry


In 2011, NIH joined with organizations interested in Down syndrome to form the Down Syndrome Consortium. The goal of this effort is to encourage the exchange of information about Down syndrome research, support, and care.

Led by NICHD's Intellectual and Developmental Disabilities Branch (IDDB),
the Down Syndrome Consortium includes members of the Trans-NIH Down Syndrome Working Group and national and international organizations that focus on Down syndrome and its related health issues.

In addition to leading the Consortium, IDDB also led the development of the first NIH-wide research plan on Down syndrome, and its follow-up, Down Syndrome Directions: NIH Research Plan on Down Syndrome (PDF 773 KB).

To learn more about the consortium and its members, visit

One of the Down Syndrome Consortium's first activities was to create a Down syndrome health registry that enables researchers to learn more about the condition from those who live with it. DS-Connect®: The Down Syndrome Registry is a scientific project that aims to learn more about the health of those with Down syndrome and to accelerate research that benefits people with the condition.

To learn more about DS-Connect®, visit

More Information

NICHD Contact: Sujata Bardhan

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