NEW YORK, NY (May 10, 2012) – Autism Speaks today announced a partnership with its Autism Genetic Resource Exchange (AGRE) program and Prometheus Research to build a data management system that will support the integration and centralization of several of Autism Speaks leading data and biospecimen repositories. This expansion will provide the research community with access to extensive clinical data, tissue, and biospecimens from over 15,000 individuals with autism spectrum disorder (ASD) and their relatives from around the world. By building capacity to develop and support more robust web-based data collection and management tools, Prometheus Research will further bolster AGRE’s role as an international data coordination center (DCC). The AGRE DCC currently houses some of the largest genetic and phenotype datasets for use in scientific research and this partnership with Prometheus will allow the AGRE DCC to ensure maximum accessibility to Autism Speaks’ signature resources.
The AGRE collection is regarded as a major genetic resource for the study of ASD, as evidenced by the productivity of the researchers using AGRE over the last 15 years. Since its inception, over 400 researchers from 36 countries have used the resource generating over 200 scientific papers. Virtually every significant ASD genetic finding in the last decade has benefitted from the resource, attesting to its importance and utility to the field. Through a 2010 NIH award, AGRE also shares data with the National Database for Autism Research (NDAR).
Prometheus Research, a leading provider of data management services for behavioral and biomedical research, will create a more robust infrastructure that will provide Autism Speaks with a centralized hub to manage data that maintains the flexibility to incorporate new studies and new significant results such as genetic, EEG and imaging data. The Prometheus Research Exchange Database (RexDB®) platform lends itself to data analysis across collections to assist in the AGRE DCC’s mission to accelerate the pace of autism research. In addition, they will also develop a web-based system that will allow research participants to more easily participate in studies via user-friendly web-based technologies. Current and future studies using the AGRE DCC will benefit from the technology developed through this partnership and will contribute further to NDAR to create an even more comprehensive database for autism research.
“We’re very excited to begin working with Autism Speaks, a premier autism research and advocacy organization. This project will enable wider integration of Autism Speaks’ valuable research data and enable them to re-use the data in multiple ways.” said Dr. Leon Rozenblit, President and CEO of Prometheus Research.
Prometheus Research’s domain expertise in autism and related disorders makes it an ideal partner for Autism Speaks. Prometheus has supported or collaborated on some of the largest and most ambitious autism research endeavors in the world, including the Simons Simplex Collection and the National Database for Autism Research (NDAR). The tools and processes they’ve helped develop in the areas of study governance, data collection, data curation, data distribution, and data persistence are now considered best practices for collaborative research, and are already in use at places including the Yale Child Study Center and the Marcus Autism Center .
“AGRE’s dedication to collaboration and data sharing has accelerated the pace of autism research significantly over the last decade,” said Autism Speaks Vice President for Clinical Programs Clara Lajonchere, Ph.D. “We strive to utilize technology that will meet the emerging needs of science and feel that the team at Prometheus Research has developed the tools that will help us achieve our goals.”
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 110 children in the U.S. is on the autism spectrum – a 600 percent increase in the past two decades that is only partly explained by improved diagnosis.
About Autism Speaks
Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of NBC and NBC Universal. Since its inception, Autism Speaks has committed over $180 million to research and developing innovative resources for families. Each year Walk Now for Autism Speaks events are held in more than 95 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.
About Prometheus Research
Prometheus Research provides data management services and web-native data-management software to biomedical researchers investigating autism and other neurodevelopmental disorders. Its team specializes in designing and building systems capable of accelerating complex interdisciplinary research and of multiplying the value of hard-won research data. Prometheus staff are consummate innovators, and Prometheus technology powers some of the most ambitious and important research endeavors in autism, including the Simons Foundation Autism Research Initiative (SFARI). Many of these innovations also are made available to the open source software community, most notably HTSQL, an instant Web interface for databases, and the Research Exchange Database, RexDB®. To learn more about Prometheus Research, please visit www.prometheusresearch.com.