Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry
- First Online:
- 750 Downloads
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.
KeywordsAutism spectrum disorders Web-based research Parent-report Community Diagnosis
- Autism and Developmental Disabilities Monitoring Network Surveillance Year 2006 Principal Investigators, & Centers for Disease Control and Prevention (CDC). (2009). Prevalence of autism spectrum disorders - autism and developmental disabilities monitoring network, United States, 2006. MMWR. Surveillance Summaries: Morbidity and Mortality Weekly Report. Surveillance Summaries/CDC, 58(10), 1–20.Google Scholar
- Chandler, S., Charman, T., Baird, G., Simonoff, E., Loucas, T., Meldrum, D., et al. (2007). Validation of the Social Communication Questionnaire in a population cohort of children with autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 46(10), 1324–1332.PubMedCrossRefGoogle Scholar
- Constantino, J. N., Davis, S. A., Todd, R. D., Schindler, M. K. G. M. M., Brophy, S. L., Metzger, L. M., et al. (2003). Validation of a brief quantitative measure of autistic traits: Comparison of the social responsiveness scale with autism diagnostic interview-revised. Journal of Autism and Developmental Disorders, 33(4), 427–433.Google Scholar
- Constantino, J. N., & Gruber, C. P. (2005). Social responsiveness scale (SRS). Western Psychological Services.Google Scholar
- Interactive Autism Network. (2009). Retrieved March 10, 2010, from www.ianproject.org.
- Lee, H., Marvin, A. R., Watson, T., Piggot, J., Law, J. K., Law, P. A., Constantino, J. N., Nelson, S. F. (2010). Accuracy of phenotyping of autistic children based on internet implemented parent report. American Journal of Medical Genetics. May 2010. [Epub ahead of print].Google Scholar
- Mandell, D. S.,Morales, K. H., Xie, M., Polsky, D., Stahmer, A., Marcus. S. C. (2010). County-level variation in the prevalence of medicaid-enrolled children with autism spectrum disorders. Journal of Autism and Developmental Disorders, Epub ahead of print.Google Scholar
- Smith, B., Smith, T., Gray, C. G., & Ryan, M. A. K. (2007). When epidemiology meets the Internet: Web-based surveys in the millennium. Cohort study. Practice of Epidemiology, 166(11), 1345–1354.Google Scholar
- StataCorp. (2007). Stata Statistical Software (Release 9) [Computer software].College Station. College Station, TX: StataCorp LP.Google Scholar