NIEHS collaborates on autism database federation
By Eddy Ball
Funded by NIEHS and four other NIH institutes and centers (ICs), the National Database for Autism Research (NDAR) has launched a precedent setting data-sharing collaboration.
NDAR, which is led by the National Institute of Mental Health (NIMH), represents a federation of data with the Autism Genetic Resource Exchange (AGRE), an Autism Speaks program. NDAR may be the largest repository to date of genetic, phenotypic, clinical, and medical imaging data related to research on autism spectrum disorders (ASD), including a portfolio of grants supported by NIEHS for research on environmental factors involved in ASD (see story).
“Access to this expanded repository of data will be extremely important for NIEHS-funded research,” said Cindy Lawler, Ph.D., the NIEHS health science administrator who oversees the Institute’s autism portfolio. "The ability to ask questions about how genetic and environmental factors act jointly to affect autism risk will be enhanced greatly, as more studies capture data on environmental exposures and share those data through NDAR, where they can be integrated with many other rich data sets that will reside there." (See related story).
In a press release Dec. 12, NIMH Director Thomas Insel, M.D., was quoted as saying, “The collaboration between AGRE and NDAR exemplifies the efforts of government and stakeholders to work together for a common cause. 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 all research communities.”
In the quest to understand ASD and develop preventive and interventional strategies for the disorders, the new federation enables investigators 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.
Databases previously federated with NDAR include Autism Speaks’ Autism Tissue Program, the Kennedy Krieger Institute’s Interactive Autism Network (IAN), and the NIH Pediatric MRI Data Repository. AGRE currently houses a clinical dataset with detailed medical, developmental, morphological, demographic, and behavioral information from people with ASD and their families.
With the expansion of the NDAR federation to include AGRE, approved NDAR users will have access to data 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 IAN.
A trans-NIH effort
Along with NIEHS and NIMH, NIH ICs supporting NDAR are the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, and the NIH Center for Information Technology.
(This story was adapted from an NIMH press release written by Karin Lee. For further information, contact Lee at the NIMH Press Office by phone at 301-443-4526 or by email at NIMHpress@mail.nih.gov.)