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NIH To Launch Down Syndrome Registry


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A first-of-its-kind national registry is in the works to help connect people with Down syndrome and researchers studying the chromosomal disorder.

The database, which is being established by the National Institutes of Health, will offer individuals with Down syndrome and their families a secure website to enter their contact details and health information so that they can connect with researchers to participate in studies.

The platform will also allow participants to confidentially compare their experience with that of others who have the developmental disability, NIH officials said.

The idea to establish a registry emerged from the NIH’s 2007 Down Syndrome Research Plan. It is also supported by members of the agency’s Down Syndrome Consortium, which includes self-advocates, family members, federal officials and leaders from advocacy organizations.

“The new registry provides an important resource to individuals with Down syndrome and their families,” said Yvonne Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is funding the effort. “The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.”

NIH has contracted with PatientCrossroads, a company that’s established similar registries for those with muscular dystrophy and other conditions, to create the new database.

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Comments (4 Responses)

  1. Tacitus says:

    What the? This is a solution in search of a problem. People with down syndrome are alerady able to connect to one another, and scientists are already able to study them. There is no good reason for the government to be tracking people with down syndrome.

  2. KA101 says:

    I wonder if it might have anything to do with the J&J study? They were hoping for closer cooperation with the government in the effort to examine PWDown (for the benefit of otherwise-NT Alzheimer’s patients).

    (Previously, on DisScoop:

  3. Ronald C Kuebler,CCC-SLP,ABDA says:

    Sounds like a good idea to me! Despite what others may say, I think families with Down syndrome individuals have limited interaction with other Down syndrome families. Also, this could help agencies to get pertinent information to a much greater percentage of appropriate families than is the case right now. In South Carolina, many families don’t know what help is available.

  4. shirley desmond says:

    Families have contact with down syndrome agencies both local and the national Down Syndrome congress. There is no good reason to have registries for any people. I believe this was done before how soon we forget.There are still some people alive with numbers under there skin in ink. Let us all stand up and protect these innocent people..

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