|Session Title: Technology Advancement Session Type: Poster|
|Session Location: Exhibit Hall, Level 2, Convention Center Session Time: Wed 10:00AM-7:00PM|
|Program Number: 942W Presentation Time: Wed, Oct 12, 2011, 3:00PM-4:00PM|
|Keywords: Technology Advancement, KW037 - DATABASES, KW054 - ETHICAL, LEGAL AND SOCIAL ISSUES, KW081 - GENOMIC METHODOLOGIES, KW080 - GENOME-WIDE ASSOCIATION, KW049 - EPIDEMIOLOGY|
Evaluation of Recruitment Strategies for Web-based Genetic Studies. E. M. Drabant, K. E. Barnholt, C. Dijamco, J. Y. Tung, A. K. Kiefer, J. L. Mountain, A. Wojcicki 23andMe, Mountain View, CA.|
Many of the hundreds of web-based genetic studies conducted by 23andMes research arm rely solely on organic recruitment through 23andMes personal genome service. For a few studies, however, 23andMe actively recruits individuals who meet particular inclusion criteria. Two examples are 23andMes Parkinsons disease and sarcoma studies. Recruitment of participants for these studies is conducted via a number of strategies. We evaluated our recruitment strategies by reviewing the changes in enrollment rate in response to each type of effort. The recruitment strategies that have been most successful include paper-based mailings from advocacy organizations such as the Michael J. Fox Foundation and the Parkinsons Institute, and email and website campaigns conducted by advocacy organizations. Grass-roots efforts led by 23andMe members affected with the disease in question have been a significant source of recruitment through online support groups and blog posts. Both studies have garnered attention in the press, which has enhanced enrollment to some extent. The strategies that have been least successful include attending and sponsoring disease-focused events, listing the study on www.clinicaltrials.gov, and speaking to disease-focused support groups. Together these efforts have resulted in rapid recruitment for both studies. In the two months after the Parkinsons study was launched, more than 2,000 patients enrolled. Two years later, the study includes 5,100 patients, the largest single cohort of Parkinsons patients to date. Since the sarcoma study was launched in April 2010, 23andMe has enrolled 519 patients with sarcoma, again, the largest cohort of its kind. Web-based genetic studies allow for global recruitment and require no participant travel. However, such studies do require participants to have Internet access and to navigate the Internet. These requirements are likely correlated with the relative success rates of the recruiting strategies in that individuals who learn of the study via the Internet or email are likely to successfully navigate the recruitment and participation process. Understanding which strategies are most effective for recruitment of web-based genetic research will inform future efforts to engage patients and develop large cohorts for research in a variety of diseases and conditions.
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