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Largest-Ever Autism Research Network Takes Shape


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Autism research efforts are getting a leg up with a new public-private partnership designed to make data on thousands with the developmental disability more available for study.

The National Institutes of Health said Monday that a new collaboration with Autism Speaks will create what’s believed to be the largest single source of research data on people with autism to date.

Under the partnership, scientists will be able to access information from the advocacy organization’s Autism Genetic Resource Exchange when they search the government’s National Database for Autism Research.

“This robust source of data will allow researchers to do what they do best — concentrate on the science — rather than expend time and resources on family recruitment and data collection,” said Clara Lajonchere, vice president of clinical programs at Autism Speaks.

On its own, the NIH database has information on 25,000 people. The partnership with Autism Speaks will add genetic, demographic and clinical data on members of 2,500 so-called multiplex families where more than one child is diagnosed with autism.

Previous collaborations made information searchable from the 7,500 families who self-report data to the Kennedy Krieger Institute’s Interactive Autism Network. In addition, the federal database already includes information from Autism Speaks’ Autism Tissue Program and the NIH Pediatric MRI Data Repository, federal officials said.

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Comments (1 Response)

  1. fairlady68 says:

    Great…just please don’t forget to reach out to and include ADULTS on the autism spectrum.

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