DS-Connect®: The Down Syndrome Registry

Please Note: The DS-Connect® website temporarily paused operations in February 2024 to migrate to a new platform. Existing data and accounts will remain secure and confidential during the pause and after relaunch.


Older woman hugging a young girl with Down syndrome.DS-Connect®: The Down Syndrome Registry is an online scientific project created to learn more about the health of those with Down syndrome and to connect people with the condition with research opportunities that benefit them. This voluntary, confidential series of online surveys—available in English and Spanish—collects basic health information about people with Down syndrome.

NICHD, through its Intellectual and Developmental Disabilities Branch (IDDB), launched this resource on behalf of NIH and with help from the Down Syndrome Consortium, a group of self-advocates and national and international organizations that focus on and support the Down syndrome community. The consortium also includes the Trans-NIH Down Syndrome Working Group, an NIH-wide group led by NICHD that coordinates ongoing and enhances future research activities related to Down syndrome.

The DS-Connect® registry activities fall under the NIH-wide INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project. Launched in 2018, the INCLUDE initiative addresses critical health and quality-of-life needs for individuals with Down syndrome. The initiative is increasing participation of people with Down syndrome and their families in clinical research, expanding knowledge about Down syndrome and its links to other health conditions, and improving the health of this important population. As part of the INCLUDE initiative, DS-Connect® registry participants and researchers can take advantage of existing relationships, infrastructure, cohorts, and data to further coordinate Down syndrome research across NIH.

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