Seminar at The Arc of Montgomery County

A Seminar on DS-Connect®: the Down Syndrome Registry at The Arc of Montgomery County.

The speakers, Melissa Parisi and Lisa Kaeser, talked about “DS-Connect®: The Down Syndrome Registry,” and gave a demonstration on how to join and the types of information a participant can view.

The main purpose of the registry is to connect people with Down syndrome with researchers, by providing health information related to their Down syndrome diagnosis. These data will be kept private and secure. Ultimately, this registry will speed up clinical research on Down syndrome with the goal of providing new treatments and improving the quality of life for individuals with Down Syndrome.

The speakers reviewed the history of this effort and why NIH is involved along with The Down Syndrome Consortium. The registry was launched in September 2013 and has 1830 participants already, with a professional portal for clinicians, researchers, and advocates under development.

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