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Autism Speaks Autism Genetic Resource Exchange joins NIH National Database for Autism Research

NEW YORK, N.Y. (DECEMBER 12, 2011) Autism Speaks North America's largest autism science and advocacy organization joins the National Institutes of Health (NIH) in announcing the addition of Autism Speaks Autism Genetic Resource Exchange (AGRE) as a data federation site for the National Database for Autism Research (NDAR). The addition of AGRE data will help create the largest multidisciplinary source of autism research data to date. NDAR, supported by the NIH, brings together many different data resources and allows researchers to pool larger datasets for their research. This multidisciplinary repository contains genetic, phenotypic, clinical, and medical imaging data related to autism spectrum disorders (ASD) and supports standards for collaboration and data sharing among researchers. AGRE currently houses genetic materials as well as detailed medical, developmental, morphological, demographic, and behavioral information from multiplex families who have more than one child on the autism spectrum. Over the last 14 years, AGRE has helped to set the standard for collaboration and data sharing in the field. AGRE joins the Autism Speaks Autism Tissue Program (ATP), the Kennedy Krieger Institute's Interactive Autism Network (IAN), and the NIH Pediatric MRI Data Repository in the NDAR federation.

"Integration of AGRE and ATP data into the NDAR federation will accelerate the pace of autism research allowing research to proceed faster, more efficiently and cost effectively," explained Autism Speaks Vice President of Clinical Programs, Clara Lajonchere, Ph.D. "More importantly, 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."

"As an organization that raises money to support research through the extraordinary efforts of hundreds of thousands of families and volunteers at hundreds of Walk Now for Autism events across North America each year, this opportunity to participate in a collaboration that will facilitate autism research on an even larger scale while cutting costs is invaluable," added Chief Science Officer Geraldine Dawson, PhD. "To the extent that research efforts may consume fewer dollars as a result of NDAR, our resources can go to support additional researchers and projects."

AGRE brings its unique collection of clinical, medical and genetic data from 2500 families including parents, siblings and children with ASD to this collaboration, and more than 11,000 DNA bio specimens. Approved NDAR users can apply for access to data from AGRE, as well as the 25,000 research participants represented in NDAR and more than 7,500 participants who reported their own information to IAN.

"The collaboration between AGRE and NDAR exemplifies the efforts of government and stakeholders working together for a common cause," said Thomas R. Insel, M.D, director of the National Institutes of Mental Health (NIMH). "NDAR continues to be a leader in the effort to standardize and share ASD data with the research community, and serves as a model to other research communities."

NDAR's mission is to facilitate data sharing and scientific collaboration on a broad scale, providing a shared common platform for autism researchers to accelerate scientific discovery. In creating a federation of data repositories, investigators are able to access data, tools, and computational techniques in NDAR and other major public and private autism databases simultaneously. By integrating results from multiple sources, NDAR provides a rich data set for multiple uses, such as data mining, aggregation, and views into the data supporting research publications.

Over the past two years, Autism Speaks has constructed the data management infrastructure which enables both the AGRE and ATP data to be integrated into NDAR. That work was supported by NIMH grants totaling approximately $1.25 million. In addition, NDAR is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke (NINDS), and the National Institute of Environmental Health Sciences (NIEHS).


Contact: Jane E. Rubinstein
Autism Speaks

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