Large Databases for Pediatric Research on Children with Autism Spectrum Disorder

ABSTRACT: Objective: This article reviews the data available in 3 large databases for use in conducting studies of children with autism spectrum disorder (ASD). Methods: The article describes the data structure, data elements, and strengths and weaknesses of the 3 data sets. Results: Each of the 3 data sets, the Interactive Autism Network (IAN), the Autism Treatment Network (ATN), and PEDSnet have large cohorts of children with ASD. IAN has strengths in patient-reported measures, ATN in clinical characterization, and PEDSnet in health care encounters and electronic medical record data. Conclusion: The data sets described here have potential for further studies that could help improve the care and well-being of children with ASD and their families. Address for reprints: Karen A. Kuhlthau, PhD, Division of General Pediatrics, Department of Pediatrics, Massachusetts General Hospital and Harvard Medical School, 125 Nashua St, 8th Floor, Boston, MA 02114; e-mail: kkuhlthau@mgh.harvard.edu. Disclosure: The authors declare no conflict of interest. Received June , 2017 Accepted October , 2017 Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.

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