NIH has launched DS-Connect at https://dsconnect.nih.gov, a web-based health registry to serve as a national health resource for people with Down syndrome and their families, researchers, and healthcare providers. NIH has applied for trademark protection for the name DS-Connect.
“The Down syndrome community has voiced a strong need for a centralized secure database to store and share health information and link to the doctors and scientists working to improve their health and quality of life,” said Yvonne T. Maddox, Deputy Director of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development which funded and developed the registry.
Participation in the registry is free and voluntary. Individuals with Down syndrome, or family members may sign up to create personalized profiles with information on their health histories, including symptoms, diagnoses, and medical visits.
The website separates users’ names from their health information so that individuals may compare their health information with other participants in an anonymous manner. If participants give permission to be contacted, the registry coordinator is then able to tell them about research studies that may be of interest.
“DS-Connect is for people of all ages, not just children,” said Dr. Maddox. “Right now, we don’t have much data on older individuals with Down syndrome and we find that to be problematic since people are living longer.
The Down Syndrome Consortium is a public-private group at http://downsyndrome.nih.gov/Pages/default.aspx, established in 2011 to foster the exchange of information on Down syndrome research. The consortium includes individuals with Down syndrome and their family members, representatives from professional societies and advocacy groups, and NIH scientists.