A new national registry is launching in an effort to connect individuals who have Down syndrome with researchers studying the chromosomal disorder.
The confidential online database known as DS-Connect is designed to collect health information on a voluntary basis from those with Down syndrome or family members who sign up on their behalf.
Participants can anonymously compare their health experiences with those of others in the registry and users can also opt to be contacted to take part in research studies.
“The Down syndrome community has voiced a strong need for a centralized, secure database to store and share health information,” said Yvonne Maddox, deputy director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health, which developed the registry.
“DS-Connect fills that need, and helps link individuals with Down syndrome to the doctors and scientists working to improve their health and quality of life,” she said.
Plans to create the registry were first announced last year after the idea emerged as one of the primary recommendations of the NIH’s 2007 Down Syndrome Research Plan. The agency’s Down Syndrome Consortium — which includes self-advocates, family members, federal officials and leaders from advocacy organizations — will help disseminate information about the new database to stakeholders, officials said.
Maddox emphasized that there is a need for registry participants of all ages.
“Right now, we don’t have much data on older individuals with Down syndrome, and that’s been a problem,” she said. “People with Down syndrome are living longer, and researchers and physicians will require information about the health issues and needs of these individuals to make recommendations about their health care.”