{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T17:37:39Z","timestamp":1791308259678,"version":"4.3.1"},"reference-count":51,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2012,10,22]],"date-time":"2012-10-22T00:00:00Z","timestamp":1350864000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J of Med Genetics Pt B"],"published-print":{"date-parts":[[2012,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Genome\u2010wide association studies (GWAS) and other emerging technologies offer great promise for the identification of genetic risk factors for complex psychiatric disorders, yet such studies are constrained by the need for large sample sizes. Web\u2010based collection offers a relatively untapped resource for increasing participant recruitment. Therefore, we developed and implemented a novel web\u2010based screening and phenotyping protocol for genetic studies of Tourette syndrome (TS), a childhood\u2010onset neuropsychiatric disorder characterized by motor and vocal tics. Participants were recruited over a 13\u2010month period through the membership of the Tourette Syndrome Association (TSA; n\u2009=\u200928,878). Of the TSA members contacted, 4.3% (1,242) initiated the questionnaire, and 79.5% (987) of these were enrollment eligible. 63.9% (631) of enrolled participants completed the study by submitting phenotypic data and blood specimens. Age was the only variable that predicted study completion; children and young adults were significantly less likely to be study completers than adults 26 and older. Compared to a clinic\u2010based study conducted over the same time period, the web\u2010based method yielded a 60% larger sample. Web\u2010based participants were older and more often female; otherwise, the sample characteristics did not differ significantly. TS diagnoses based on the web\u2010screen demonstrated 100% accuracy compared to those derived from in\u2010depth clinical interviews. Our results suggest that a web\u2010based approach is effective for increasing the sample size for genetic studies of a relatively rare disorder and that our web\u2010based screen is valid for diagnosing TS. Findings from this study should aid in the development of web\u2010based protocols for other disorders. \u00a9 2012 Wiley Periodicals, Inc.<\/jats:p>","DOI":"10.1002\/ajmg.b.32107","type":"journal-article","created":{"date-parts":[[2012,10,22]],"date-time":"2012-10-22T14:11:15Z","timestamp":1350915075000},"page":"987-996","source":"Crossref","is-referenced-by-count":12,"title":["Effectiveness of a web\u2010based protocol for the screening and phenotyping of individuals with tourette syndrome for genetic studies"],"prefix":"10.1002","volume":"159B","author":[{"given":"Crystelle A.","family":"Egan","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan E.","family":"Marakovitz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia 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