Article ID | Journal | Published Year | Pages | File Type |
---|---|---|---|---|
3943175 | Gynecologic Oncology | 2015 | 4 Pages |
•An online patient-facing registry improved accrual over a paper based registry.•Online registry participants matched to studies faster than paper based participants•Fifteen percent of women who participated in the registry enrolled in clinical trials
ObjectiveTo address a deficiency in clinical trial and research enrollment in gynecologic cancer studies, we launched a paper based patient research registry. To improve registry enrollment, we transitioned to an online registry and trial matching mechanism to aid women in accessing open studies.MethodsUtilizing a validated verification platform, we designed a web-based registry and trial matching mechanism for women over age 18. Participants completed a questionnaire to provide information for trial matching. A focus group of registry participants was held 9 months after the start of the study to evaluate barriers to participation.ResultsA total of 322 women were enrolled in the online registry over a 14 month period which was a 4.3 fold increase over the paper-based registry (p < 0.0001). Two hundred and sixty three (82%) women were matched to at least one study. Fifteen percent (39/263) of those eligible for studies went on to enroll. The online enrollment rate to studies was not different from that observed in the paper-based registry (26/172, p = 0.934), however, the web-based registry linked participants to subsequent studies 27% more rapidly (68 (+/− 98) days vs. 93 (+/− 81) days for the paper-based registry, p = 0.017). Focus group participants identified areas for improvement.ConclusionWeb-based patient driven registry provides dramatic improvement in the number of participants enrolled and the time to trial linkage compared to a paper based registry at a single institution. Further studies of barriers to research participation are necessary to improve on this model.