What is the National Down Syndrome Patient Registry?
The NIH-supported National Down Syndrome Patient Registry will allow people with Down syndrome and their family members, researchers, and parent and support groups to share information and health history in a safe, confidential, online database. Users will be able to create and edit their customizable online profiles, share their profiles with other Registry users, and set reminders for medical care and other appointments and events. The Registry will also provide access to general information about Down syndrome, as well as de-identified statistical data based on user responses to survey questions.
When will the National Down Syndrome Patient Registry be available?
Currently, the anticipated launch date for the Registry is July 2013.
Who can access the Registry?
Those with Down syndrome and their families will need to provide their consent for the Registry before they can create their password-protected profiles. If a user gives permission to be contacted, then clinicians and researchers who are authorized will contact these individuals to see if they are interested in participating in research studies. The Registry will comply with all regulations and laws governing privacy, personally identifiable information, and health data.
Why do we need a National Down Syndrome Patient Registry?
Creating a national registry was a primary recommendation of the 2007 NIH Down Syndrome Research Plan, which helped set goals and objectives for the Down syndrome research field. The development of the national registry was also supported by the Down Syndrome Consortium, a public-private partnership established in 2011 to further the exchange of information on Down syndrome research and to implement and update the Research Plan.