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NDAR, AGRE Team Up to Create Autism Data Repository

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The National Database for Autism Research and the Autism Genetic Resource Exchange are working together to link resources that hold data related to research on autism spectrum disorders.

NDAR, which is supported by the National Institutes of Health; and AGRE, which is an Autism Speaks program, will create a repository that contains genetic, phenotypic, clinical, and medical imaging data related to autism, the organizations said.

This will include a clinical dataset, which AGRE currently houses, that contains medical, developmental, morphological, demographic, and behavioral information from people with ASD and their families.

Under the terms of the partnership, approved NDAR users will have access to data culled from the 25,000 research participants represented in NDAR, as well as 2,500 AGRE families and more than 7,500 participants who reported their own information to the Kennedy Krieger Institute’s Interactive Autism Network.

In a statement, Thomas Insel, director of NIH's National Institute of Mental Health, said the collaboration between the two groups "exemplifies the efforts of government and stakeholders to work together for a common cause."

He also that NDAR will continue to participate in efforts to "standardize and share ASD data with the research community."

Built around the concept of federated repositories, NDAR integrates and standardizes data, tools, and computational techniques across multiple public and private autism databases. It then provides researchers with access to results for independent analyses, to supplement their own research data, or to evaluate the data supporting published journal articles, among other uses.

NDAR has also been involved in Autism Speaks’ Autism Tissue program, IAN, and the NIH Pediatric MRI data repository.

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