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National Down Syndrome Registry Goes Live

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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.”

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Comments (3 Responses)

  1. MsAmericanPatriot says:

    Boards like this should NOT be in existence. With Down Syndrome and Autism both demonized by the liberals, this would be used by them to hunt these individuals down. I see NO good come from boards like the one above. It would be abused and the cost could be people with Down or Autism lives. These boards just demonize and chastise us to no end. We should be allowed to live out our lives in PRIVATE and boards like that would NOT allow for it AT ALL.

  2. DSmom says:

    This is an excellent idea and will help families who think their child or adult with DS is the only one who has a certain symptom or problem to find others in the same boat, and, hopefully, benefit from other families’ knowledge about effective treatments. In cases where there isn’t any effective treatment yet, it will hopefully lead to researchers developing treatments. The notion that “liberals” demonize people with DS is poppycock! It’s the liberals, after all, who continue to advocate for Medicaid and SSI funding for everyone who needs it; for inclusion for all; for voting rights for all….

  3. Haley'sSister says:

    I believe that more data and information that is gathered regarding Down Syndrome can help doctors and individuals with Down Syndrome. My sister lived 21 years and that was more than the doctors ever said she would live because there was no data. Now that the information can be gathered from those individuals or families can help future generations. I think this is a great idea and would love to participate in a project that would collect this important information.

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