Original Paper

Journal of Autism and Developmental Disorders

, Volume 42, Issue 2, pp 257-265

First online:

Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry

  • Amy M. DanielsAffiliated withDepartment of Medical Informatics, Kennedy Krieger InstituteDepartment of Mental Health, Johns Hopkins Bloomberg School of Public Health
  • , Rebecca E. RosenbergAffiliated withDepartment of Medical Informatics, Kennedy Krieger Institute
  • , Connie AndersonAffiliated withDepartment of Medical Informatics, Kennedy Krieger Institute
  • , J. Kiely LawAffiliated withDepartment of Medical Informatics, Kennedy Krieger InstituteDepartment of Pediatrics, Johns Hopkins University School of Medicine, Johns Hopkins Medical Institutions
  • , Alison R. MarvinAffiliated withDepartment of Medical Informatics, Kennedy Krieger Institute
  • , Paul A. LawAffiliated withDepartment of Medical Informatics, Kennedy Krieger InstituteDepartment of Pediatrics, Johns Hopkins University School of Medicine, Johns Hopkins Medical Institutions Email author 

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Abstract

Growing interest in autism spectrum disorder (ASD) research requires increasingly large samples to uncover epidemiologic trends; such a large dataset is available in a national, web-based autism registry, the Interactive Autism Network (IAN). The objective of this study was to verify parent-report of professional ASD diagnosis to the registry’s database via a medical record review on a sample of IAN Research participants. Sixty-one percent of families agreed to participate; 98% (n = 116) of whom provided documentation verifying a professionally diagnosed ASD. Results of this study suggest that information collected from parents participating in IAN Research is valid, participants can be authenticated, and that scientists can both confidently use IAN data and recruit participants for autism research.

Keywords

Autism spectrum disorders Web-based research Parent-report Community Diagnosis