Large Databases for Pediatric Research on Children with Autism Spectrum Disorder

Karen A Kuhlthau; L Charles Bailey; Briella L Baer; Daniel L Coury; J Kiely Law; Donna S Murray; Hanieh Razzaghi; Christopher B Forrest; Paul H Lipkin

doi:10.1097/DBP.0000000000000534

Large Databases for Pediatric Research on Children with Autism Spectrum Disorder

J Dev Behav Pediatr. 2018 Feb/Mar;39(2):168-176. doi: 10.1097/DBP.0000000000000534.

Authors

Affiliations

¹ Division of General Pediatrics, Department of Pediatrics, Massachusetts General Hospital and Harvard Medical School, Harvard University, Boston, MA.
² Applied Clinical Research Center, Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA.
³ Department of Medical Informatics, Kennedy Krieger Institute, Baltimore, MD.
⁴ Department of Pediatrics, The Ohio State University, Developmental and Behavioral Pediatrics, Nationwide Children's Hospital, Columbus, OH.
⁵ Department of Pediatrics, Johns Hopkins Medicine, Baltimore, MD.
⁶ Science Department, Autism Speaks, Cincinnati Children's Hospital, Division of Developmental and Behavioral Pediatrics, Boston, MA.

PMID: 29239865
DOI: 10.1097/DBP.0000000000000534

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Autism Spectrum Disorder*
Biomedical Research*
Databases, Factual*
Datasets as Topic*
Humans
Pediatrics*