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National Down Syndrome Registry

The National Down Syndrome Congress (NDSC) along with the National Institutes of Health (NIH) have announced the opening of its Down syndrome research registry, DS-Connect™.

DS-Connect™ is a web-based, health registry that serves as a national health resource for people with Down syndrome and their families, researchers, and health care providers.  “The Down syndrome community has voiced a strong need for a centralized, secure database to store and share health information.  DS-Connect™ fills that need, and helps link individuals with Down syndrome to the doctors and scientists working to improve their health and quality of life,” said Yvonne T. Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which funded and developed the registry.

Participation in the registry is free and voluntary and most importantly, the website has been designed to ensure that all information remains confidential.

To register for DS-Connect™:

  1. Go to
  2. Click the button “Join the registry” on the DS-Connect™ registry homepage
  3. Create an account by entering your name, email, username, and password
  4. Read the consent form and check the appropriate consent/assent boxes
  5. Enter the Security code and click “Register”
  6. Fill out the information about the person with Down syndrome and answer the Initial Health Questionnaire

And finally, EXPLORE THE DATA!

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    Lafayette sign
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  • Madison and dad