Large databases for pediatric research on children with autism spectrum disorder

Karen A. Kuhlthau, L. Charles Bailey, Briella L. Baer, Daniel L. Coury, Jessica K Law, Donna S. Murray, Hanieh Razzaghi, Christopher B. Forrest, Paul Howard 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 - Jan 1 2018

Fingerprint

Autistic Disorder
Databases
Pediatrics
Research
Electronic Health Records
Delivery of Health Care
Autism Spectrum Disorder
Therapeutics
Datasets

Keywords

  • Autism
  • Database
  • Epidemilogy

ASJC Scopus subject areas

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

Cite this

Large databases for pediatric research on children with autism spectrum disorder. / Kuhlthau, Karen A.; Bailey, L. Charles; Baer, Briella L.; Coury, Daniel L.; Law, Jessica K; Murray, Donna S.; Razzaghi, Hanieh; Forrest, Christopher B.; Lipkin, Paul Howard.

In: Journal of Developmental and Behavioral Pediatrics, Vol. 39, No. 2, 01.01.2018, p. 168-176.

Research output: Contribution to journalArticle

Kuhlthau, Karen A. ; Bailey, L. Charles ; Baer, Briella L. ; Coury, Daniel L. ; Law, Jessica K ; Murray, Donna S. ; Razzaghi, Hanieh ; Forrest, Christopher B. ; Lipkin, Paul Howard. / Large databases for pediatric research on children with autism spectrum disorder. In: Journal of Developmental and Behavioral Pediatrics. 2018 ; Vol. 39, No. 2. pp. 168-176.
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