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

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)168-176
Number of pages9
JournalJournal of Developmental and Behavioral Pediatrics
Volume39
Issue number2
DOIs
StatePublished - 2018

Keywords

  • Autism
  • Database
  • Epidemilogy

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Developmental and Educational Psychology
  • Psychiatry and Mental health

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