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.
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.
- Content Type Journal Article
- Pages 1-9
- DOI 10.1007/s10803-011-1236-7
- Authors
- Amy M. Daniels, Department of Medical Informatics, Kennedy Krieger Institute, 3825 Greenspring Avenue, Painter Building 1st Floor, Baltimore, MD 21211, USA
- Rebecca E. Rosenberg, Department of Medical Informatics, Kennedy Krieger Institute, 3825 Greenspring Avenue, Painter Building 1st Floor, Baltimore, MD 21211, USA
- Connie Anderson, Department of Medical Informatics, Kennedy Krieger Institute, 3825 Greenspring Avenue, Painter Building 1st Floor, Baltimore, MD 21211, USA
- J. Kiely Law, Department of Medical Informatics, Kennedy Krieger Institute, 3825 Greenspring Avenue, Painter Building 1st Floor, Baltimore, MD 21211, USA
- Alison R. Marvin, Department of Medical Informatics, Kennedy Krieger Institute, 3825 Greenspring Avenue, Painter Building 1st Floor, Baltimore, MD 21211, USA
- Paul A. Law, Department of Medical Informatics, Kennedy Krieger Institute, 3825 Greenspring Avenue, Painter Building 1st Floor, Baltimore, MD 21211, USA
- Journal Journal of Autism and Developmental Disorders
- Online ISSN 1573-3432
- Print ISSN 0162-3257