DS-Connect®: The Down Syndrome Registry

Overview

In 2006, the NIH Director asked NICHD, through its Intellectual and Developmental Disabilities Branch (IDDB), to lead the formation of the Trans-NIH Down Syndrome Working Group to coordinate ongoing and enhance future research activities related to Down syndrome. In 2011, NICHD led NIH and other organizations interested in Down syndrome to create the Down Syndrome Consortium.

The Consortium’s goal is to encourage the exchange of information about Down syndrome research, support, and care. Led by NICHD's IDDB, the Down Syndrome Consortium includes members of the Trans-NIH Down Syndrome Working Group and national and international organizations and foundations that focus on Down syndrome and its related health issues, along with self-advocates.

One of the 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 connect people with the condition with research opportunities that benefit them.

The DS-Connect website is a confidential, online resource—available in English and Spanish—that allows access to health surveys and information anytime, anywhere. Participants can also learn about Down syndrome research studies and the health of other DS-Connect participants.

Researchers from the trans-NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project, to address critical health and quality-of-life needs for individuals with Down syndrome, are now working with DS-Connect participants and researchers to enhance data and to encourage people with Down syndrome to get involved with the INCLUDE project.

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