National Database for Autism Research

Last updated
National Database for Autism Research
Founded2006
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 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 multiple national institute centers. [note 1] 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. As of November 2013, data from over 90,000 research participants are available to qualified investigators through the NDAR portal. [1]

Contents

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. [2]

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. [3]

The Autism Informatics Consortium (AIC) was launched in 2011 with the goal of making informatics tools and resources to autism researchers. Current members include Autism Speaks, Kennedy Krieger Institute, Simons Foundation, Prometheus Research, and the NIH. [4]

NDAR Organization

Global Unique Identifier (GUID)

The NDAR GUID is a subject identifier used to protect the confidentiality of a research subject. [5] The GUID is the result of a collaboration between NDAR, the Simons Foundation, and a team of researchers from Columbia University. [6]

Data dictionary

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] The NDAR also 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]. [8]

Data sharing

In January 2011, NDAR developed and implemented automated 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.

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.

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.

Awards

See also

Notes

  1. ↑ Those institutions being the NIH, the NIMH, the NICHD, the NINDS, the NIEHS, and the CIT.

References

  1. ↑ About Us - NDA, archived from the original on 2020-06-10
  2. ↑ Policy for the National Database for Autism Research
  3. ↑ Policy for the National Database for Autism Research
  4. ↑ IACC 2011 Strategic Plan
  5. ↑ 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.
  6. ↑ Researchers debut unique identifiers for study participants, Deborah Rudacille, September 2, 2010
  7. ↑ , Genomics Sample Data Structure
  8. ↑ , NDAR Neuroimaging Definitions
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