ImPORTND – Training for Research Teams and Patient and Family Partners to Conduct Patient-Oriented Research in Neuromuscular Diseases
As requirements for patient engagement in research continue to grow, we have fielded many questions from research teams and patients about how they can begin working together.
Taking the first steps towards establishing a patient-oriented research strategy can be the most challenging, which is why we are partnering with Muscular Dystrophy Canada (MDC) to offer free training and support services for research teams and patients to empower all members of the research team to conduct research that is informed by, and most meaningful to individuals living with neuromuscular diseases.
In February we launched our imPORTND training platform to offer online, self-directed, free training modules designed for all members of the study team including researchers and lab staff, and patients and family partners. By taking the imPORTND training, patients and research teams will not only be better equipped to conduct patient-oriented research but can also take advantage of further resources available from MDC to help build partnerships between research teams and trained patient partners.
Matching research teams and trained patient partners, and providing support for patient partner compensation
We are working with MDC to connect research teams with trained patient partners whose experiences and research interests align with the proposed area of research, and support to compensate patient-partners for their involvement.
If you are a researcher interested in learning more about these resources, please contact Dr. Homira Osman, VP public policy and research at MDC to learn more.
About the imPORTND modules
imPORTND has been co-developed with a team of expert patient partners, clinicians, researchers, and patient partner organization members, and is the first patient-oriented research (POR) training developed specifically for neuromuscular disease research. The training modules are available in English (imPORTND) and French (inFORMERMN).
On completion of the imPORTND training (module 1: Readiness for patient-oriented research and module 2: Inclusion/Diversity/Equity/Accessibility), you will be awarded a certificate of completion from NMD4C and MDC.
Read next...
A Milestone in Neuromuscular Care: AGAMREE® (vamorolone) Approved as the First Treatment for Duchenne Muscular Dystrophy in Canada
Health Canada has approved AGAMREE® (vamorolone), the first-ever treatment for Duchenne Muscular Dystrophy (DMD) in Canada. Patient Support Program opens for enrollment on October 10, 2025.
New Best Practice Recommendations for SBMA Care in Canada
Congratulations to Dr. Kerri Schellenberg, the team of Canadian experts, NMD4C Steering Committee members and Investigators, on publishing the first Canadian SBMA care guidelines!
Advancing Neuromuscular Research and Care: Highlights from the 2025 NMD4C Annual Meeting
On September 11, NMD4C hosted its 2025 Annual Meeting in Ottawa, bringing together clinicians, researchers, trainees, and partners for a full day of collaboration, strategic dialogue, and community-building.
NMD4C Hosts Inaugural Clinical Summer School to Empower Canada’s Future Neuromuscular Leaders
On September 10–11, NMD4C hosted its inaugural Clinical Summer School in Ottawa, bringing together 19 neuromuscular clinical fellows from across Canada for two days of hands-on training, mentorship, and networking. Led by national experts and co-chaired by Drs. Gordon Jewitt and Marianne Nury, the program complemented NMD4C’s accredited lecture series and fostered peer connection through dedicated community-building sessions.
2026 Neuromuscular Postdoctoral Research Fellowships Funding Competition is Now Open!
Apply Or Share this opportunity with the trainees in your network — Deadline: October 14, 2025. Hosted by Neuromuscular Disease Network for Canada (NMD4C) and Muscular Dystrophy Canada (MDC)
Announcing the 2026 Neuromuscular Clinical Fellowship Award Recipients
We are excited to share that the 2026 Neuromuscular Clinical Fellowship Awards have been awarded! These fellowships strengthen clinical training in neuromuscular medicine and help prepare the next generation of specialists who will advance neuromuscular care across Canada.