Building the Canadian Bladder Cancer Research Network (CBCRN): Progress During a Pandemic

Abstract

Treatment Options for Bladder Cancer (CISTO) Study. 3 CISTO is a pragmatic, multicenter (academic and community settings), observational study where the patients choose their own treatment. It is designed to answer a question that is not feasibly addressed by a randomized trial. The patient-informed study design includes also outcomes prioritized by patients (Table 1). Bladder cancer research prioritization in CanadaDr. Alimohamed reviewed the results of a Canadian survey of research priorities among bladder cancer patients. This survey was initiated as part of the ongoing Canadian bladder cancer quality of care initiative 4 , building on a similar Canadian survey in kidney cancer 5 and a UK survey in bladder cancer. 6 Dr. Alimohamed credited the work of Gore and colleagues 2 as the foundation for the topic list used in the Canadian survey, aiming to validate the results of the US group in Canadian bladder cancer patients.A link to the Canadian survey was sent by email using the BCC mailing list to bladder cancer patients and caregivers in March 2020 and September 2020. A total of 504 individuals responded, of whom 495 gave consent to participate. Of these, 429 answered at least 80% of the survey questions. Most of the respondents (~80%) were patients and the remainder were caregivers. Respondents had non-muscle invasive bladder cancer (NMIBC) in 65% of cases, muscle-invasive disease (MIBC) in 28% and metastatic disease in 5%. The results of the Canadian survey were concordant with the U.S. and U.K. experiences. The top five topics for each disease stage are shown in Table 2. Two new themes that emerged were the BCG shortage, including options for treatment, impact on outcomes and mitigation strategies, and shared decision-making, including tools to help patients gain more knowledge about treatment options and side effects.Dr. Alimohamed went over the next steps in the research prioritization process, namely, to hold a stakeholder meeting to review the results, update the questions and re-evaluate the priorities; to send a second iteration of the survey to Canadian patients; and to disseminate the results. Dr. Alimohamed also reviewed the alignment of patient research priorities with research funding decisions and fund allocation in both the U.S. and Canada. 7 There is a plan to repeat this analysis at a later date, after the Canadian priorities have been disseminated. Clinical research collaborationThe second session of the Forum was designed to stimulate collaborative clinical research through the CBCRN, mimicking a similar session at the 2020 Bladder Cancer Translational Summit. An open invitation was circulated to all bladder cancer researchers before the Forum requesting submission of concepts that would benefit from involvement from other sites across the country. Eleven researchers presented initiatives in development which are summarized in Table 3. Each researcher will follow-up as needed with potential collaborators to complete next steps, which will be facilitated by the CBCRN.