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National Database for Autism Research (NDAR): Big Data Opportunities for Health Services Research and Health Technology Assessment

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Abstract

The National Database for Autism Research (NDAR) is a US National Institutes of Health (NIH)-funded research data repository created by integrating heterogeneous datasets through data sharing agreements between autism researchers and the NIH. To date, NDAR is considered the largest neuroscience and genomic data repository for autism research. In addition to biomedical data, NDAR contains a large collection of clinical and behavioral assessments and health outcomes from novel interventions. Importantly, NDAR has a global unique patient identifier that can be linked to aggregated individual-level data for hypothesis generation and testing, and for replicating research findings. As such, NDAR promotes collaboration and maximizes public investment in the original data collection. As screening and diagnostic technologies as well as interventions for children with autism are expensive, health services research (HSR) and health technology assessment (HTA) are needed to generate more evidence to facilitate implementation when warranted. This article describes NDAR and explains its value to health services researchers and decision scientists interested in autism and other mental health conditions. We provide a description of the scope and structure of NDAR and illustrate how data are likely to grow over time and become available for HSR and HTA.

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Acknowledgments

Nalin Payakachat, J. Mick Tilford, and Wendy J. Ungar conceptualized the manuscript and prepared the final draft. We wish to thank the National Database for Autism Research (NDAR) staff, Dan Hall and Dr. Svetlana Novikova, who assisted in providing information that contributed to this manuscript.

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Authors and Affiliations

  1. Division of Pharmaceutical Evaluation and Policy, University of Arkansas for Medical Sciences, 4301 W. Markham Street, Slot 522, Little Rock, AR, 72205, USA

    Nalin Payakachat & J. Mick Tilford

  2. Department of Health Policy and Management, University of Arkansas for Medical Sciences, Little Rock, AR, USA

    J. Mick Tilford

  3. Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada

    Wendy J. Ungar

  4. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

    Wendy J. Ungar

Authors
  1. Nalin Payakachat
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  2. J. Mick Tilford
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  3. Wendy J. Ungar
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Correspondence to Nalin Payakachat.

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Funding

This study was supported by the National Institute of Mental Health (NIMH; Grant No. R03MH102495) with Nalin Payakachat serving as the principal investigator. The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the NIMH or the National Institutes of Health.

Conflict of interest

Nalin Payakachat and J. Mick Tilford serve on a grant that seeks to identify novel uses in the NDAR. Wendy J. Ungar declares no conflict of interest.

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Payakachat, N., Tilford, J.M. & Ungar, W.J. National Database for Autism Research (NDAR): Big Data Opportunities for Health Services Research and Health Technology Assessment. PharmacoEconomics 34, 127–138 (2016). https://doi.org/10.1007/s40273-015-0331-6

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  • DOI: https://doi.org/10.1007/s40273-015-0331-6

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