NIH-funded database sets standard for collaboration and data sharing

A data partnership between the National Database for Autism Research (NDAR), and the Autism Genetic Resource Exchange (AGRE) positions NDAR as possibly the largest repository to date of genetic, phenotypic, clinical, and medical imaging data related to research on autism spectrum disorders (ASD).

"The collaboration between AGRE and NDAR exemplifies the efforts of government and stakeholders to work together for a common cause," said Thomas R. Insel, M.D., director of the National Institute of Mental Health, part of NIH. "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."

NDAR is supported by the National Institutes of Health; AGRE is an Autism Speaks program.

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. Built around the concept of federated repositories, NDAR integrates and standardizes data, tools, and computational techniques across multiple public and private autism databases. Through NDAR, researchers can access results from these different sources at the same time, using the rich data set to conduct independent analyses, supplement their own research data, or evaluate the data supporting published journal articles, among many other uses.

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.

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.