The Global Down Syndrome Foundation just released the information that the National Institutes of Health is establishing a National Down Syndrome Patient Registry.
This is pretty exciting news as there is nothing like this for the Down syndrome community.
From the press release: The national registry will collect much needed medical information from
people with Down syndrome, and connect people with Down syndrome and
their families with scientists engaging in research that is of interest
to those people and their families. The registry will be used to
identify critical health trends, the most effective treatments and
clinical trials for potential therapies.
People with Down syndrome or their families will be able to enter and
update contact information and health history in an online, secure,
confidential database. Participants can choose which information they
would like to display, receive reminders about their own medical care
and compare their medical information to that of other registrants
confidentially and anonymously.
Those who give permission may be contacted by authorized clinicians and
researchers to see whether they are interested in joining a research
From Michelle Sie Whitten, Executive Director of the GDSF, "Clearly if implemented and supported appropriately, this will be a huge
game-changer regarding health outcomes for our children and adults with
It doesn't say when the registry will be online, but hopefully soon!