DS-Connect: The Down Syndrome Registry provides people with Down syndrome and their families the opportunity to participate in research studies, connect with approved Down syndrome researchers, and access resources and community events.
Overview
DS-Connect: The Down Syndrome Registry enables the Down syndrome community to connect with approved researchers, express interest in clinical studies, and complete surveys to improve understanding of their health, especially as they age. DS-Connect is available in English and Spanish.
NICHD, through its Intellectual and Developmental Disabilities Branch (IDDB), launched this registry in 2013 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 NIH-wide Down Syndrome Working Group that coordinates ongoing and 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 INCLUDE Project 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 these individuals. 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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