Major Databases Link Up to Advance Autism Research

December 8, 2009 • Press Release

Researchers studying autism spectrum disorders (ASD) will soon have access to a vast range of data and research tools through the NIH National Database for Autism Research (NDAR) .

Different labs often collect the same kinds of data. But they are often described differently, making it difficult to pool those data in any meaningful way. The NDAR research portal was designed to specifically address these differences by providing tools to define and standardize the complex data landscape that characterizes ASD research.

"Open access to data from many people and many studies is paramount in ASD research because of the tremendous range of symptom type and severity among those affected," said NIMH Director Thomas R. Insel, M.D. "This network of digital resources will enable the research community to more quickly solve the scientific puzzle of ASD."

By spring 2010, NDAR will make available the data from more than 10,000 participants enrolled in ASD research studies. Investigators will be able to perform a single query in the NDAR portal to view results across multiple datasets.

NDAR eventually will link with other significant data resources, including:

• The Autism Genetic Resource Exchange (AGRE), which was created by the advocacy group Cure Autism Now and is currently sponsored by Autism Speaks, is an electronic data repository housing genotypic and phenotypic information from more than 1,000 families affected by ASD
• The Interactive Autism Network (IAN), which is an online project of the Kennedy Krieger Institute with funding from Autism Speaks, contains data on 30,000 individuals with an ASD diagnosis whose families have voluntarily submitted information of interest to scientists
• The NIMH Genetics Repository, which stores clinical data, biological materials, and genetic analysis data for more than 3,000 individuals with ASD
• The NIMH Transcriptional Atlas of Human Brain Development, which aims to map when and where in the brain genes are transcribed through development
• The Pediatric MRI Data Repository, which receives support from four NIH Institutes including NIMH, stores rich phenotypic and imaging data from more than 500 typically developing children, from birth to young adulthood.

"A major goal of NDAR is to ensure that submitted data are clearly defined and to harmonize those definitions across other key ASD-relevant data resources," explained NDAR Director and associate director of NIMH for Scientific Technology Research, Michael Huerta Ph.D. "Doing so will not only help in pooling data across different labs and studies, but will also help to transform ASD research from traditional, individual lab projects to a more collaborative approach."

Researchers supported through the Autism Centers of Excellence (ACEs) were the first to contribute data to NDAR in 2008. Since then, NDAR staff has continued to transfer data from earlier NIH programs, such as the Collaborative Programs of Excellence in Autism (CPEA) and Studies to Advance Autism Research and Treatment (STAART) into NDAR. Data from the majority of ASD grants that were recently funded through the American Reinvestment and Recovery Act (Recovery Act), as well as from ASD studies conducted at NIH, will also be submitted to and shared through NDAR. Other ASD researchers have also been encouraged to add their study data, regardless of funding source (see NIH Guide Notice ).

NDAR was created through the joint efforts of NIMH, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Environmental Health Sciences, the National Institute of Neurological Disorders and Stroke, and the NIH Center for Information Technology (CIT)