National Database for Autism Research

The National Database for Autism Research (NDAR) is a secure research data repository promoting scientific data sharing and collaboration among autism spectrum disorder (ASD) investigators. The project was launched in 2006 as a joint effort between five institutes and centers at the National Institutes of Health (NIH): the National Institute of Mental Health (NIMH), the National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Environmental Health Sciences (NIEHS), and the Center for Information Technology (CIT). The goal of NDAR is to provide a shared common platform for data collection, retrieval, and archiving to accelerate the advancement of research on autism spectrum disorders. The largest repository of its kind, NDAR makes available data at all levels of biological and behavioral organization for all data types. As of November 2013, data from over 90,000 research participants are available to qualified investigators through the NDAR portal. Summary information about the available data is accessible through the NDAR public website. By 2020, NDAR integrated with the Research Domain Criteria Database, the National Database for Clinical Trials related to Mental Illness, and the NIH Pediatric MRI Repository to form the National Institute of Mental Health Data Archive.

In response to the heightened societal concern over ASD, the United States Congress passed the Combating Autism Act (CAA) of 2006 (P.L. 109–416).

Question 7, Objective H of the IACC Strategic Plan emphasizes the creation of mechanisms to specifically support the contribution of data into NDAR from 90 percent of newly initiated projects regardless of funding source, and the linking of NDAR with other existing data resources by 2012.

Thomas Insel, the Director of NIMH, oversees NDAR and its implementation and participates on a Governing Committee responsible for the ongoing management and stewardship of NDAR. This committee includes several other NIH Institute and Center directors or their designees.

The NDAR Implementation Team (NIT) is one of the groups providing direction on NDAR, specifically data submission and access, in order to promote consistent participant protections. The team is composed of program staff representing Institutes and Centers with autism research in their portfolios.

The Autism Informatics Consortium (AIC) was launched in 2011 with the goal of accelerating scientific discovery by making informatics tools and resources more useful to autism researchers. Current members include Autism Speaks, Kennedy Krieger Institute, Simons Foundation, Prometheus Research, and the NIH.

The NDAR GUID is a subject identifier used to protect the confidentiality of a research subject. The GUID is the result of a collaboration between NDAR, the Simons Foundation, and a team of researchers from Columbia University.

After thorough analyses of functional genomics acquisition and storage criteria as well as a review of the needs of the research community, NDAR staff developed a tool to simply and clearly define the relationship between samples and data files. A predefined set of parameters was built that would guarantee the consistency of raw experimental data, while simplifying the data definition for submission and aggregation across federated repositories. The predefined set of parameters includes attributes specific to each experiment (such as molecule and sub-molecule), experiment technology, vendor and platform, extraction protocol and kit, processing protocol and kits, analysis software, equipment.