Recruitment of newly diagnosed ovarian cancer patients proved challenging in a multicentre biobanking study

Objective: To explore the challenges of recruiting ovarian cancer patients and healthy controls to a cancer biobanking study. Study Design and Setting: The study was set up in gynecological cancer centers in 10 National Health Service trusts across the United Kingdom. Women were approached if they were undergoing investigations/awaiting treatment for ovarian cancer, had a previous diagnosis of ovarian cancer, or were attending for annual screening in an ovarian cancer screening trial. Those who consented completed a detailed epidemiologic questionnaire, provided blood and tissue samples if appropriate. Results: The overall proportion of those recruited compared with the expected targets was 76.4% for healthy controls, 86.0% for old cases, and 46.9% for new cases. Only 4 of 10 (40%) centers recruited over 50% of their target for new cases. Unwillingness to participate was reported as primarily because of patients being too unwell, wanting to focus only on their treatment, or having insufficient time because of conflicting medical appointments. Concerns about use of personal data or tissue and blood samples for genetic research and lack of direct benefit were reported as significant challenges to recruitment. Conclusion: When setting recruitment targets for patients undergoing investigations or awaiting treatment for cancer (new cases), it is important to consider lower response rates because of various patient, logistical, and trial-specific challenges. (C) 2011 Elsevier Inc. All rights reserved.