DOWN SYNDROME REGISTRY

DS-Connect

NIH’s National Institute of Child Health and Human Development (NICHD)

A national registry which has been launched by the NICHD in an effort to connect individuals who have Down syndrome with researchers who are studying DS.

This registry will allow family members to anonymously compare their health experiences with others.

Families can also find out about research, and can chose to participate in research studies if they desire.

There is a particular need for older individuals with Down syndrome to join the registry, as people with DS are living longer than they ever have in the past, and information will help maintain health and quality of life for others.

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