Journal of Autism and Developmental Disorders

, Volume 42, Issue 2, pp 257–265 | Cite as

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

  • Amy M. Daniels
  • Rebecca E. Rosenberg
  • Connie Anderson
  • J. Kiely Law
  • Alison R. Marvin
  • Paul A. Law
Original Paper
First Online:

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 
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Notes

Acknowledgments

This study was supported by Autism Speaks. The funder had no role in determining content. We are grateful to Eleeshabah Yahudah for her role in study recruitment and communication with families. We gratefully acknowledge the contributions of IAN families without which this research would not be possible.

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Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  • Amy M. Daniels
    • 1
    • 2
  • Rebecca E. Rosenberg
    • 1
  • Connie Anderson
    • 1
  • J. Kiely Law
    • 1
    • 3
  • Alison R. Marvin
    • 1
  • Paul A. Law
    • 1
    • 3
  1. 1.Department of Medical InformaticsKennedy Krieger InstituteBaltimoreUSA
  2. 2.Department of Mental HealthJohns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  3. 3.Department of PediatricsJohns Hopkins University School of Medicine, Johns Hopkins Medical InstitutionsBaltimoreUSA

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