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 geneticmaterial 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.
I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu