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Down Syndrome Research

This newsletter highlights some recent advances in Down syndrome research from the Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers (IDDRCs), a network supported by the National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH). NICHD also supports DS-Connect®: The Down syndrome registry, which is an online health registry to collect basic demographic and health information about people with Down syndrome. Approved scientists or researchers can view the DS-Connect® de-identified data on the Professional Portal and use this information to develop research projects and to recruit for clinical studies, while still protecting the privacy of those who take part in the registry. 

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    DS-Connect® is a powerful resource where people with Down syndrome and their families can:
    • Connect with researchers and health care providers.
    • Express interest in participating in certain clinical studies on Down Syndrome, including studies of new medications and other treatments.
    • Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with Down Syndrome across their lifespans.