Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry
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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.
- Andrews, D., Nonnecke, B., & Preece, J. (2003). Electronic survey methodology: A case study in reaching hard to involve Internet users. International Journal of Human-Computer Interaction, 16(2), 185–210. CrossRef
- 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.
- Berument, S. K., Rutter, M., Lord, C., Pickles, A., & Bailey, A. (1999). Autism screening questionnaire: Diagnostic validity. British Journal of Psychiatry, 175, 444–451. CrossRef
- 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. CrossRef
- Charman, T., Baird, G., Simonoff, E., Loucas, T., Chandler, S., Meldrum, D., et al. (2007). Efficacy of three screening instruments in the identification of autistic-spectrum disorders. The British Journal of Psychiatry, 191, 554–559. CrossRef
- 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.
- Constantino, J. N., & Gruber, C. P. (2005). Social responsiveness scale (SRS). Western Psychological Services.
- Eaves, L. C., Wingert, H. D., Ho, H. H., & Mickelson, E. C. R. (2006). Screening for autism spectrum disorders with the Social Communication Questionnaire. Developmental and Behavioral Pediatrics, 27(2), S94–S103. CrossRef
- Epstein, J., & Klinkenberg, W. D. (2002). Collecting data via the Internet: the developmental and deployment of web-based survey. Journal of Technology in Human Services, 19(2–3), 33–47. CrossRef
- Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children. Autism, 13, 375–387. CrossRef
- Evans, J. R., & Mathur, A. (2005). The value of online surveys. Internet Research, 15(2), 195–219. CrossRef
- Fombonne, E. (2009). Epidemiology of pervasive developmental disorders. Pediatric Research, 65(6), 591–598. CrossRef
- Fricker, R. D., & Schonlau, M. (2002). Advantages and disadvantages of internet research surveys: Evidence from the literature. Field Methods, 14, 347. CrossRef
- Gosling, S. D., Vazire, S., Srivastava, S., & John, O. P. (2004). Should we trust web based studies? A comparative analysis of six preconceptions about internet questionnaires. American Psychologist, 59(2), 93–104. CrossRef
- Huang, H. (2006). Do print and web surveys provide the same results? Computers in Human Behavior?, 22, 334–350. CrossRef
- Interactive Autism Network. (2009). Retrieved March 10, 2010, from www.ianproject.org.
- Johnson, C. P., Myers, S. M., & the Council on Children With Disabilities. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215. CrossRef
- Kogan, M. D., Blumberg, S. J., Schieve, L. A., Boyle, C. A., Perrin, J. A., Ghandour, R. M., et al. (2007). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics, 124(4), 1–9. CrossRef
- 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].
- 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.
- Morton, L. M., Cahill, J., & Hartge, P. (2006). Reporting participation in epidemiologic studies: A survey of practice. American Journal of Epidemiology, 163(3), 197–203. CrossRef
- Pottie, C. G., & Ingram, K. M. (2008). Daily stress, coping, and well-being in parents of children with autism: A multilevel modeling approach. Journal of Family Psychology, 22(6), 864–885. CrossRef
- Rosenberg, R. E., Daniels, A. M., Law, J. K., Law, P. A., & Kaufmann, W. E. (2009). Trends in autism spectrum disorder diagnoses: 1994–2007. Journal of Autism and Developmental Disorders, 39(8), 1099–1111. CrossRef
- Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. V., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119, S114–S121. CrossRef
- 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.
- Spyridakis, J. H., Wei, C., Barrick, J., Cuddihy, E., & Maust, B. (2005). Internet-based research: Providing a foundation for web-design guidelines. Transactions on Professional Communication, 48(3), 242–260. CrossRef
- StataCorp. (2007). Stata Statistical Software (Release 9) [Computer software].College Station. College Station, TX: StataCorp LP.
- Umbach, P. D. (2004). Web based surveys: Best practices. New Directions for Institutional Research, 121, 23–38. CrossRef
- Wilson, A., & Laskey, N. (2003). Internet based marketing research: A serious alternative to traditional research methods? Marketing Intelligence & Planning, 21(2), 79–84. CrossRef
- Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry
Journal of Autism and Developmental Disorders
Volume 42, Issue 2 , pp 257-265
- Cover Date
- Print ISSN
- Online ISSN
- Springer US
- Additional Links
- Autism spectrum disorders
- Web-based research
- Industry Sectors
- Author Affiliations
- 1. Department of Medical Informatics, Kennedy Krieger Institute, 3825 Greenspring Avenue, Painter Building 1st Floor, Baltimore, MD, 21211, USA
- 2. Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
- 3. Department of Pediatrics, Johns Hopkins University School of Medicine, Johns Hopkins Medical Institutions, Baltimore, MD, USA