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Table 1 Barriers and potential solutions to conducting nephrology trials in Canada

From: Establishing a Canadian national clinical trials network for kidney disease: proceedings of a planning workshop

Specific barrier Potential solutions
Lack of engagement at community sites
♦ MD engagement
• Site PIs may have no vested interest
• Multiple physicians in a shared care clinic model: may not have buy-in from all treating MDs
Involve community centers and site PIs earlier in the process (i.e., during protocol development) to get “buy-in”; learn local practices and pitfalls early
Identify local champions (mentioned repeatedly)—MDs, nurses, allied health, and patients
♦ Nursing engagement
• Treating nurses not engaged
Involve local nurses and allied health in steering committee to get buy-in
CANN-NET Clinical Trials Committee could assist in developing the skill set of local champions
♦ Patient engagement Advertise studies to patients better
See below
♦ Inability to sustain momentum: physicians are busy and the ongoing commitment, time, and effort required to continue participation is often too high Simplify protocols so that minimal time is required (autopilot study)
Increase role of central/site coordinators to automate management
♦ Lack of communication between PI and local centers Increase PI presence at the community sites and provide feedback on recruitment success and deliverables—periodic newsletters, recruitment progress tables, personal phone calls, site visits
It was emphasized that this should not just be emails
♦ Lack of trained research nurses or coordinators
• Not enough work to maintain a full-time research coordinator
• Some nurses willing to do part-time RCT work but do not have proper training
• Lack of financial support for research nurses
Provide CANN-NET central coordinator who could
• Provide training/support for part-time personnel
• Assist with ethics
Simplify protocols to reduce workload—decrease follow-up visits, data collection, etc.
Coordinator from academic site could recruit patients at community centers if distances are not too far—grants should thus budget for travel; facilitate through CANN-NET
Provide more funding (via grant) to allow research nurse salaries to be in line with clinical salaries
Hire people on a lower pay-scale for tasks not requiring advanced skill set, e.g., data entry
Lack of engagement of patients (at all sites)
♦ Patients feel trials are a burden; they may feel it is a disruption to their care Present trials as an option for patients to improve their care (similar to the way oncology trials are presented) rather than giving perception that patients are doing investigators a favor
Engage patients directly through advertising
Engage patients during protocol development stage
Conduct focus groups to determine what the barriers are to patient participation; facilitate through CANN-NET
Get local buy-in from nurses and allied health
♦ Patients are “trialed out”—same populations for different trials means same patients are being asked again and again See below
♦ Cognitive and language barriers Understand the impact of these at the local level
Simplify and translate consent forms
Central training of coordinators to improve comprehension of trial participation
Competition and overlap
♦ Too many trials in overlapping populations; competition with other trials Local sites could state interests and concentrate participation on a few trials at a given time
CANN-NET Clinical Trials Committee could assist in matching the right project with the right site (patient population) through web-based registry
Engage more community sites that are not participating in any trials as yet through CANN-NET
Onerous Research Ethics Board requirements
♦ Separate REB for each site is time and effort consuming CANN-NET should
• Advocate for a national REB standard
• Advocate for an expedited site review process for protocols approved at a central site
Language and cultural barriers
♦ French sites often left out of trials for this reason and this is a lost opportunity
♦ Limited communication between investigators in and outside Quebec
This barrier is often artificial (perceived rather than real) as trial-related materials are often in multiple languages including French; improved communication with centers would assist with this problem
Trial budgets should include money for translation of materials; this cost is justified by the importance of including Canadians from diverse backgrounds and the increased potential for recruitment
CANN-NET could assist with translation
Increase communication, networking, and collaboration between Quebec and other provinces via CANN-NET
Lack of funding for and prioritization of nephrology trials
  Need to increase exposure of importance of renal disease to provincial agencies; e.g., could CANN-NET convince provincial renal agencies to match CIHR/KFoC funding for certain successful grants addressing network priorities?
National agencies and this CANN-NET network could align efforts to improve branding (advertising, advocates) in order to increase exposure of nephrology disease and nephrology research and secure more funding
  1. PI principal investigator, MD medical doctors, RC research coordinator