Down Syndrome Patient Registry
National Institutes of Health (NIH) Press Release
October 26, 2012
Registry connects individuals with Down syndrome with researchers
The National Institutes of Health, in partnership with a third-party vendor, PatientCrossroads, has established a Down syndrome patient registry which will aim to assemble contacts and information sharing among families, patients, researchers and parent groups. According to a press release announcing the new registry, it will allow people with Down syndrome or their family members to enter their contact information and health history in what the institute says is an online, secure, confidential database.
