DS-Connect®: The Down Syndrome Registry
April 25, 2016
Is your family member with Down syndrome registered with DS-Connect®?
DS-Connect®: The Down Syndrome Registry is a voluntary and confidential registry, launched by the National Institutes of Health, that collects basic information on individuals with Down syndrome.
According to the DS-Connect website, this online registry helps individuals with Down syndrome and their families to:
- 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 the health of people with Down syndrome across their lifespans.
Join DS-Connect® by going to https://DSConnect.nih.gov and click “Join the registry”. Create an account, complete the consent form, and provide information and complete a variety of surveys on the individual with Down syndrome.
Your participation is greatly appreciated!
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