Clinical Trial Coordination
In 2021, Bonnie Wooten joined the clinical trial working group as the clinical trial concierge. Together, the concierge and the team work to unite stakeholders in the Canadian neuromuscular clinical trial landscape including clinicians and trial sites, partner organizations including MDC and Jesse’s Journey, industry and people affected by NMDs. The role of the clinical trial (CT) concierge is to act as an information broker for clinical trials for all Canadian clinical care sites and to support the NMD4C community with consistent knowledge, awareness, and access to information across sites. The concierge role was created to strengthen the clinical trial landscape and be a resource to all key stakeholders.
A key priority of the concierge is to work with investigators to develop solutions to barriers associated with bringing neuromuscular clinical trials to Canada. Bonnie has been working to forge connections with the various clinical trial sites across Canada, and has worked closely with national partners MDC and Jesse’s Journey, the Canadian Neuromuscular Disease Registry (CNDR), industry, and has also connected with international organizations such as the Care and Trial Site Registry (CTSR) of Freiburg, Germany.
The CT working group has launched a NMD4C concierge web page, formalized partnerships with the CTSR and CNDR to streamline feasibility and recruitment requests, grown the membership of the CTSR and CNDR, and conducted a landscaping survey of Canadian trial sites and training opportunities.
While continuing all of the initiatives undertaken to date, the clinical trial team is also working to develop a neuromuscular-specific CT education course to increase the capacity and availability of trial sites, and will continue to grow the profile of Canadian neuromuscular CT sites through establishing relationships with sites internationally.