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.
Those who participant in the database registry can customize a profile, update it, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. It will also allow for confidential comparisons to others with Down syndrome. Researchers will also have access to the database, and be able to contact willing participants in possible research studies.
The goal of the registry is to make it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.The contract goes through the entire creation of the registry to September 2013, and is worth $300,000 in funding for its first year.
"The new registry provides an important resource to individuals with Down syndrome and their families," Yvonne T. Maddox, M.D., deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), said in a statement. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."