One step closer with a Down syndrome patient registry

Great news!  We’re excited to share the NIH’s announcement of a Down syndrome patient registry.  After close collaboration with the community to assess needs and priorities, the NIH has committed to the initial funding and development of this registry specifically for people with DS. This registry will facilitate communication among families, researchers, clinicians, and patient groups, towards the goal of making it easier for patients to learn about and take part in clinical studies for new medications and other treatments for Down syndrome.

“DSRTF is extremely grateful to the NIH for the establishment and initial funding of this registry,” says Dr. Michael M. Harpold, DSRTF’s Chief Scientific Officer, “and we very much appreciate having the opportunity to work closely with the NIH on this important initiative.  The new registry will be crucial to facilitating and supporting new clinical studies and trials for the benefit of people with Down syndrome.”

In the past year DSRTF has welcomed the chance to participate in the NIH’s Down Syndrome Consortium, which fosters the exchange of information on Down syndrome research.  We are pleased and encouraged by the NIH’s commitment to creating an environment of collaboration and progress, and energized that with this announcement, we’ve moved one step closer to an even more effective partnership among researchers, clinicians, and families.

3 responses to “One step closer with a Down syndrome patient registry

  1. When is the Down Syndrome Patient Registry scheduled to go online?

  2. Is the registry up and running yet? Where do you sign up?

  3. As above, wanting additional information regarding how and when.

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