NIH Launches Web Portal To Facilitate Down Syndrome Research

February 3, 2015 in News

NIH has launched a new Web portal that gives researchers access to data on patients with Down syndrome to help plan clinical studies on the disease, MedCity News reports.

Details of Portal

The Web portal is part of NIH’s DS-Connect: The Down Syndrome Registry site, which contains de-identified data on patients with Down syndrome.

The new portal will allow researchers to examine patients’ health histories and other medical information, including:

  • Diagnoses; and
  • Symptoms.

Researchers also can apply for a higher level of access, which will allow them to:

  • Identify patients for clinical trials;
  • Perform customized searches of the data; and
  • Propose survey questions.

Clinical study requests will be coordinated by the registry for patients who have indicated that they are willing to participate (Verel, MedCity News, 1/28).

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