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WEDNESDAY, Sept. 11 (HealthDay News) -- The first national Down syndrome registry in the United States has been launched by the U.S. National Institutes of Health.
The DS-Connect web-based registry will serve as a free resource for people with Down syndrome and their families, as well as health care providers and researchers. Participation in the registry is voluntary.
"The Down syndrome community has voiced a strong need for a centralized, secure database to store and share health information. 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," Yvonne Maddox, deputy director of the U.S. National Institute of Child Health and Human Development (NICHD), said in a news release from the National Institutes of Health. The NICHD funded and developed the registry.
People with Down syndrome -- or their family members on their behalf -- can sign up to create personalized profiles so they can anonymously compare their health information to other participants. The site has been designed to keep all personal information confidential so participants cannot be identified by other people using the site.
If participants wish to be informed about research studies that might be of interest to them, they can give permission for the registry coordinator to contact them.
"DS-Connect is for people of all ages, not just children," Maddox said. "Right now, we don't have much data on older individuals with Down syndrome, and that's been a problem. 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."
A public-private group called the Down Syndrome Consortium will play an important role in helping to spread information about the registry to the Down syndrome community. The consortium is made up of people with Down syndrome and their relatives, as well as National Institutes of Health scientists and representatives from professional societies and advocacy groups.
"We've been fortunate to have so many experts and advocates provide input on this effort," Maddox said. "The establishment of this registry is a tremendous step forward for Down syndrome research, and the resource will become all the more beneficial as more individuals join in the months and years ahead."
-- Robert Preidt
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SOURCE: U.S. National Institutes of Health, news release, Sept. 6, 2013