This article reviews the data available in 3 large databases for use in conducting studies of children with autism spectrum disorder (ASD).
The article describes the data structure, data elements, and strengths and weaknesses of the 3 data sets.
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.
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: firstname.lastname@example.org.
Disclosure: The authors declare no conflict of interest.
Received June , 2017
Accepted October , 2017