We report our experience recruiting and retaining participants in a regional site as part of the Australian Centre of Excellence in Melanoma Imaging and Diagnosis (ACEMID). To date, over 740 participants have been enrolled. Participants undergo 3D total body imaging, dermoscopic assessment of melanocytic lesions, and complete a questionnaire, with follow-up at 6, 12, or 24 months depending on melanoma risk.
Recruitment uptake has been very strong, with more expressions of interest than we were able to accommodate. Most participants heard about the study through traditional media, including local radio and newspapers, followed by Facebook and word of mouth. Common reasons for participation included concern about skin cancer, particularly among those with a history of outdoor work, and wanting to contribute to research. Many participants highly valued access to advanced imaging technology in a regional setting.
Retention and adherence to follow-up visits have been excellent. A recurring challenge, however, has been participants viewing study visits as a substitute for clinical care. Clear expectation-setting early on has been important, including written communication to participants and their general practitioners (GPs) emphasising that the study does not replace routine skin checks. When advised to seek separate clinical review, some participants reported difficulty accessing local GP or dermatology services, and consequent delays in arranging biopsies.
We also encountered variable understanding of the study among GPs, particularly regarding their role in ongoing care. This was improved through clear, detailed letters outlining the study protocol and expectations.
Overall, our experience suggests that large-scale melanoma research is feasible and welcomed by participants in regional settings, provided communication with participants and primary care is clear and consistent.