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Large Databases for Pediatric Research on Children with Autism Spectrum Disorder

Kuhlthau, Karen, A., PhD*; Bailey, L., Charles, MD, PhD; Baer, Briella, L., MHS; Coury, Daniel, L., MD§; Law, J., Kiely, MD, MPH‡,‖; Murray, Donna, S., PhD; Razzaghi, Hanieh, MPH; Forrest, Christopher, B., MD, PhD; Lipkin, Paul, H., MD‡,‖

Journal of Developmental & Behavioral Pediatrics: February/March 2018 - Volume 39 - Issue 2 - p 168–176
doi: 10.1097/DBP.0000000000000534
Special Article

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.

*Division of General Pediatrics, Department of Pediatrics, Massachusetts General Hospital and Harvard Medical School, Harvard University, Boston, MA;

Applied Clinical Research Center, Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA;

Department of Medical Informatics, Kennedy Krieger Institute, Baltimore, MD;

§Department of Pediatrics, The Ohio State University, Developmental and Behavioral Pediatrics, Nationwide Children's Hospital, Columbus, OH;

Department of Pediatrics, Johns Hopkins Medicine, Baltimore, MD;

Science Department, Autism Speaks, Cincinnati Children's Hospital, Division of Developmental and Behavioral Pediatrics, Boston, MA.

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

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