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

doi:10.1007/s10803-011-1236-7

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

Kennedy Krieger Institute

Research output: Contribution to journal › Article › peer-review

157 Scopus citations

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. Sixtyone 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.

Original language	English (US)
Pages (from-to)	257-265
Number of pages	9
Journal	Journal of Autism and Developmental Disorders
Volume	42
Issue number	2
DOIs	https://doi.org/10.1007/s10803-011-1236-7
State	Published - Feb 2012

Keywords

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

ASJC Scopus subject areas

Developmental and Educational Psychology

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10.1007/s10803-011-1236-7

Cite this

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title = "Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry",

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. Sixtyone 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, Community, Diagnosis, Parent-report, Web-based research",

author = "Daniels, {Amy M.} and Rosenberg, {Rebecca E.} and Connie Anderson and Law, {J. Kiely} and Marvin, {Alison R.} and Law, {Paul A.}",

note = "Funding Information: 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.",

year = "2012",

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doi = "10.1007/s10803-011-1236-7",

language = "English (US)",

volume = "42",

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journal = "Journal of Autism and Developmental Disorders",

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AU - Daniels, Amy M.

AU - Rosenberg, Rebecca E.

AU - Anderson, Connie

AU - Law, J. Kiely

AU - Marvin, Alison R.

AU - Law, Paul A.

N1 - Funding Information: 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.

PY - 2012/2

Y1 - 2012/2

N2 - 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. Sixtyone 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.

AB - 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. Sixtyone 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.

KW - Autism spectrum disorders

KW - Community

KW - Diagnosis

KW - Parent-report

KW - Web-based research

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Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry

Abstract

Keywords

ASJC Scopus subject areas

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