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

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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.

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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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Authors and Affiliations

  1. Department of Medical Informatics, Kennedy Krieger Institute, 3825 Greenspring Avenue, Painter Building 1st Floor, Baltimore, MD, 21211, USA

    Amy M. Daniels, Rebecca E. Rosenberg, Connie Anderson, J. Kiely Law, Alison R. Marvin & Paul A. Law

  2. Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Amy M. Daniels

  3. Department of Pediatrics, Johns Hopkins University School of Medicine, Johns Hopkins Medical Institutions, Baltimore, MD, USA

    J. Kiely Law & Paul A. Law

Authors
  1. Amy M. Daniels
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  2. Rebecca E. Rosenberg
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  3. Connie Anderson
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  4. J. Kiely Law
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  5. Alison R. Marvin
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  6. Paul A. Law
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Correspondence to Paul A. Law.

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Daniels, A.M., Rosenberg, R.E., Anderson, C. et al. Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry. J Autism Dev Disord 42, 257–265 (2012). https://doi.org/10.1007/s10803-011-1236-7

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  • DOI: https://doi.org/10.1007/s10803-011-1236-7

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