DS-Connect™: The Down Syndrome RegistryPosted: September 17, 2013
The NIH has established a new Down syndrome patient registry that will facilitate contacts and information sharing among families, patients, researchers and parent groups.
DS-Connect™ will allow people with Down syndrome or their family members to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.
If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.
“The new registry provides an important resource to individuals with Down syndrome and their families,” said Yvonne T. Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. “The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.”
To read more about or register with this confidential database visit DS-Connect™.