title: National Database for Autism Research (NDAR): Big Data Opportunities for Health Services Research and Health Technology Assessment.
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.
authors.affiliation: Division of Pharmaceutical Evaluation and Policy, University of Arkansas for Medical Sciences, 4301 W. Markham Street, Slot 522, Little Rock, AR, 72205, USA. npayakachat@uams.edu.
authors.forename: Nalin
authors.initials: N
authors.lastname: Payakachat
authors.affiliation: Division of Pharmaceutical Evaluation and Policy, University of Arkansas for Medical Sciences, 4301 W. Markham Street, Slot 522, Little Rock, AR, 72205, USA.|Department of Health Policy and Management, University of Arkansas for Medical Sciences, Little Rock, AR, USA.
authors.forename: J Mick
authors.initials: JM
authors.lastname: Tilford
authors.affiliation: Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada.|Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
authors.forename: Wendy J
authors.initials: WJ
authors.lastname: Ungar
mesh_terms: D001321:Autistic Disorder / Q000175:diagnosis / Q000628:therapy; D002648:Child; D003299:Cooperative Behavior; D003625:Data Collection / Q000379:methods; D016208:Databases, Factual; D006302:Health Services Research / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination; D008403:Mass Screening / Q000379:methods; D013673:Technology Assessment, Biomedical / Q000379:methods*; D014481:United States