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Autism Speaks Helps Create World’s Largest Source of Autism Research Data

December 09, 2011



Today, Autism Speaks joins the National Institutes of Health in announcing the addition of Autism Speaks Autism Genetic Resource Exchange (AGRE) to the National Database for Autism Research (NDAR). 

The collaboration creates the world’s largest source of autism research information for use by qualified scientists. It is made possible by the voluntary participation of families across North America.

“This integration will accelerate the pace of autism research, allowing research to proceed faster, more efficiently and cost effectively,” explains Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D.

While keeping the identity of individual donors confidential, AGRE houses the genetic material and associated medical, developmental and behavioral information from thousands of families with more than one child on the autism spectrum. These large numbers allow researchers to greatly improve the accuracy and reliability of their findings on autism’s causes and risk factors. It also provides a potential source of information for studying rarer subtypes of autism spectrum disorder, which may respond differently to promising new treatments in the discovery pipeline.

Over the last 14 years, AGRE has helped set the standards for collaboration and data sharing in the autism field, Lajonchere explains. It now joins Autism Speaks Autism Tissue Program, the Kennedy Krieger Institute’s Interactive Autism Network and the National Institutes of Health Pediatric MRI Data Repository in the NDAR collection.

“This collaboration will facilitate autism research on an unprecedented scale, while cutting the costs of high-quality research,” says Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. “Thanks go to our families, volunteers and financial donors.”

Adds Thomas R. Insel, M.D, director of the National Institutes of Mental Health: “The collaboration between AGRE and NDAR exemplifies the efforts of government and stakeholders working together for a common cause.”

For more information on AGRE, click here; on NDAR, here. For a personal perspective, see our blog by Dusan Bosnjakovic, Autism Speaks director of research information systems.

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