National Database for Autism Research

National Database for Autism Research

Founded	2006
Founder	National Institutes of Health
Successor	NIMH Data Archive
Headquarters	Rockville, Maryland
Key people	Greg Farber, Ph.D. (Director) Dan Hall (Manager) Brian Koser (Operations Manager) Gretchen Navidi (Principal Analyst, Grants Management) Svetlana Novikova, Ph.D. (Principal Analyst, Genomics) Anne Sperling, Ph.D. (Health Science Policy Analyst)
Website	ndar.nih.gov

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.

Background

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.

Oversight and governance

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.

NDAR Organization

Global Unique Identifier (GUID)

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.

Genomics tool

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.

Imaging tool

NDAR currently supports the receipt of unprocessed brain images in DICOM format, as well as processed images in variety of formats, including DICOM, MINC 1.0 and 2.0, Analyze, NIfTI-1, AFNI and SPM. Images could be visualized using NDAR's built-in image registration and visualization tool [MIPAV].

Data submission

Investigators working on autism-related projects, regardless of their funding source, are strongly encourages to submit any type of autism-related data generated in their laboratories.

Data sharing

NDAR's Ongoing Study capability allows investigators to work collaboratively on research studies in progress; sharing data, tools, and standards through the NDAR portal before they are shared with the rest of the ASD community. Qualified researchers can also request access to data stored in NDAR and/or data stored at federated repositories, after the data are made public. To gain access to that data, an investigator must obtain NDAR data access privileges. By default, all data contained in NDAR has passed data validation ensuring that all research participant data has an NDAR GUID, conforms to the NDAR data standard, and meets standard value constraints. Beginning with the January 2011 submissions, NDAR developed and implemented automated quality procedures that are run against all incoming data to check for a variety of potential data discrepancies such as duplicate data, uniformity of gender, age consistency across measures, and scoring errors on a number of measures. Not only will the new QA procedures make NDAR-residing data of higher quality, but will increase data accuracy across each individual laboratory and project.

Federation

NDAR is federated with four other private databases- the Autism Genetic Resource Exchange (AGRE), the Autism Tissue Program (ATP), and the Interactive Autism Network (IAN). This federation allows the data to be kept in their respective locations while enabling users to search across the databases simultaneously. These repositories all use the NDAR GUID as well as common data definitions. NDAR is currently finalizing a federation agreement with the Simons Foundation.

Federal databases

NDAR is linked to the following federal data repositories providing a wealth of information in one central location: the Pediatric MRI Data Repository Archived 2019-01-10 at the Wayback Machine, dbGaP, dbVaR, and the Sequence Read Archive.

NDAR Study

The NDAR Study allows researchers to record basic information about the cohort, measures, analysis, and results of a study, linking to data contained in NDAR as well as the resulting publication. This tool allows others to replicate results and understand the data analysis methods. NDAR data is associated with PubMed papers; readers are able to easily access the NDAR data from PubMed using this feature.

Awards

• 2008 and 2009 NIH Award of Merit
• 2011 HHS Innovates Award
• NIMH's Top 10 Research Advances of 2011

See also

• Interagency Autism Coordinating Committee

External links

• National Database for Autism Research
• National Database for Autism Research - YouTube
• NDAR Federation Creates Largest Source of Autism Research Data to Date
• NIH Autism Coordinating Committee
• NIH Funds New Program to Investigate Causes and Treatment of Autism
• Sharing Heterogeneous Data: the National Database for Autism Research