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Monday, April 07, 2014

Have You Registered?

If you have a family member who has Down syndrome have you heard of DS-Connect? If you've heard of it, have you registered yet?

DS-Connect is a national Down syndrome database where families can share as much, or as little, information as they want.

What is the purpose of the registry?  "...will facilitate contacts and information sharing among families, patients, researchers and parent groups." It also " “...links those seeking volunteers for their research studies with those who most stand to benefit from the research.”

How can it be used? For professionals - Researchers, clinicians and other professionals can access de-identified aggregate data to identify target populations for study or trial planning or recruitment.

For families - explore the information you and others have provided to learn more about Down syndrome and its impact on other community members.

DS Achieves explains it is: "a resource for connecting researchers with families and self-advocates willing to participate in research and clinical trials. Called “DS-Connect,” the NIH Down syndrome registry will also help researchers improve our overall understanding of DS as a condition with the health histories, symptoms, and diagnosis information that families voluntarily provide.

For decades, DS researchers have lacked commonplace tools and capabilities necessary to advance their work to the next level, including a national DS registry. Without them, we can’t move from basic research to clinical trials to drug therapies or best practices that can meaningfully improve the quality of life for people with DS."

You can find out more about this registry by reading the FAQ.

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