National Database for Autism Research
 | |
| Founded | 2006 |
|---|---|
| Founder | National Institutes of Health |
| Defunct | 2018 |
| Successor | National Institute of Mental Health Data Archive |
| Headquarters | Rockville, Maryland |
| Website | Official website (archived) |
The National Database for Autism Research (NDAR) was an American data repository that promoted scientific data sharing and collaboration among autism researchers. The project was launched in 2006 as a joint effort between five institutes and multiple national institute centers.[note 1] The goal of NDAR was to provide a shared common platform for data collection, retrieval, and archiving to accelerate the advancement of autism research. As of November 2013, data from over 90,000 research participants was available to qualified investigators through the NDAR portal.[1] By 2018, NDAR had been subsumed by the National Institute of Mental Health (NIMH) Data Archive.
Oversight and governance
The director of NIMH oversaw NDAR and its implementation and belonged to a governing committee responsible for its ongoing management. This committee included several other National Institutes of Health (NIH) institute and center directors or their designees.[2]
The NDAR Implementation Team was one of the groups providing direction on NDAR, specifically data submission and access, in order to promote consistent participant protections.[2]
The Autism Informatics Consortium was launched in 2011 with the goal of making informatics tools and resources to autism researchers. Members at launch included Autism Speaks, the Kennedy Krieger Institute, the Simons Foundation, Prometheus Research, and the NIH.[3]
Projects
Global Unique Identifier
The NDAR Global Unique Identifier (GUID) is a subject identifier used to protect the confidentiality of a research subject.[4][5] The GUID was the result of a collaboration between NDAR, the Simons Foundation, and a team of researchers from Columbia University.[6]
Data dictionary
As of 2014, NDAR provided and curated a data dictionary containing over 400 instruments (forms) for data definition by the autism researcher community.[5]
Tools
After 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 better define the relationship between the samples and data files.[7]
Data sharing
As of 2012, NDAR supported 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 the built-in image registration and visualization tool (MIPAV).[4]
By 2015, NDAR was accessible through the LONI Pipeline processing environment.[8] The repository also provided basic descriptive and aggregate summary information for general public use.[2]
Federation
As of 2012, NDAR was federated with four other private databases: the Autism Genetic Resource Exchange, the Autism Tissue Program, and the Interactive Autism Network. This federation allowed the data to be kept in its respective locations while enabling users to search across the databases simultaneously. These repositories all used the NDAR GUID, as well as common data definitions.[4]
Retirement
On July 11, 2017, the NIMH proposed combining NDAR with several other digital repositories, including the Research Domain Criteria Database, the National Database for Clinical Trials Related to Mental Illness, and the NIH Pediatric MRI Repository, under the banner of the NIMH Data Archive. By 2018, the newly combined archive had begun releasing new data sets to researchers.[9]
Awards
See also
Notes
References
- ↑ About Us - NDA, archived from the original on 2020-06-10
- 1 2 3 "Policy for the National Database for Autism Research (NDAR)" (PDF). Archived from the original (PDF) on 2025-04-10.
- ↑ "Interagency Autism Coordinating Committee 2011 Strategic Plan" (PDF). Archived from the original (PDF) on 2011-05-11.
- 1 2 3 Hall, Dan; Huerta, Michael F.; McAuliffe, Matthew J.; Farber, Gregory K. (2012). "Sharing Heterogeneous Data: The National Database for Autism Research". Neuroinformatics. 10 (4): 331–339. doi:10.1007/s12021-012-9151-4. PMC 4219200. PMID 22622767.
- 1 2 Hall, Dan (June 2014). "NDAR Big Data Realities" (PDF) (Presentation).
- ↑ Researchers debut unique identifiers for study participants, Deborah Rudacille, September 2, 2010
- ↑ , Genomics Sample Data Structure
- ↑ Torgerson, Carinna M.; Quinn, Catherine; Dinov, Ivo; Liu, Zhizhong; Petrosyan, Petros; Pelphrey, Kevin; Haselgrove, Christian; Kennedy, David N.; Toga, Arthur W.; Van Horn, John Darrell (March 2015). "Interacting with the National Database for Autism Research (NDAR) via the LONI Pipeline workflow environment". Brain Imaging and Behavior. 9 (1): 89–103. doi:10.1007/s11682-015-9354-z. ISSN 1931-7557. PMC 4447326. PMID 25666423.
- ↑ "National Institute of Mental Health (NIMH)". National Institutes of Health. 2025-01-21. Retrieved 2026-08-22.
- ↑ "The HHSinnovates Program: Winners' Gallery". United States Department of Health and Human Services. Archived from the original on 2011-10-04. Retrieved 2026-08-22.
- ↑ "NIMH's Top 10 Research Advances of 2011". National Institute of Mental Health. 2011-12-23. Archived from the original on 2012-01-09. Retrieved 2026-08-22.