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.
This position is independently objective and design to serve as an impartial resource, not funded by industry and is for all neuromuscular stakeholders.
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 will be to work with Investigators to develop solutions to barriers associated with bringing neuromuscular clinical trials to Canada.
The benefits of working with the Concierge are highlighted as follows:
• Help investigators at the early stages of trial forecasting, to learn about timelines and locations for early recruitment and feasibility assessment
• Engage CNDR for early phase feasibility and update CTSR site information when needed
• Launch participating investigator meetings in preparation for and during trial approval
• Respond to patients, caregivers, clinicians and patient advocacy group requests for information about all aspects of clinical trial opportunities and logistics
• Coordinate communications and trial activities during active studies
• Assist with final report for trial results
• Provide information on specific trial sites across Canada
• Provide information on trials Concierge is engaged in, such as inclusion/exclusion criteria and specific site recruitment
• Link families with appropriate contacts like Muscular Dystrophy Canada and Jesse’s Journey
• Triage families to appropriate study sites and appropriate research coordinators
• Provide information on specific trials across Canada
Do you have a question about research, clinical trials, neuromuscular disorder and don’t know where to turn for answers? Muscular Dystrophy Canada has a dedicated research hotline! Call 1-800-567-2873 ext 1121 or email . MDC’s research team can:
• Tell you about new studies and treatments
• Let you know about clinical trials that you may be eligible for
• Show you how to search online for clinical trials and get in touch with the clinical trial coordinators
• Answer any science-related questions you may have
- Provide feasibility information
- Facilitate contact with trial sites, investigators and key opinion leaders
- Provide information about paediatric and adult neuromuscular trial capabilities across Canada
The CT Concierge serves as an impartial resource for all neuromuscular stakeholders, including but not limited to:
- Patient Partners
- Basic Scientists
Contact the Concierge to see how the they can support you, and how you can work together to strengthen the Canadian clinical trial landscape!
Contact the Concierge
For further information please contact CT Concierge Bonnie Wooten at or at 1-866-226-8003 (toll free).