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...
Scheduled Maintenance
Please note that this website, imPORTND, and the NNLS training platform will undergo maintenance from July 23 until July 27, 2026.
Discover Neuromuscular Talent Across Canada
The NMD4C Neuromuscular Talent Pool is now live with new trainees! We invite supervisors and research groups to explore the Talent Pool to identify candidates whose skills, experience, and interests align with your work and upcoming positions. Trainees interested in being included in the Neuromuscular Talent Pool can register by completing the short form, uploading a CV and brief personal statement outlining their experience, interests, and career goals. For more information and to access the Talent Pool, please visit our website.
Join Us at the 2026 NMD4C Annual Meeting on 25 September
The 2026 NMD4C Annual Meeting will take place in Calgary on Friday, September 25, 2026. The agenda will feature a brief network update, trainee and early-career recognitions, flash talks, a health economics research showcase, and a series of cross‑disciplinary and parallel clinical/pre‑clinical discussion sessions to explore key topics, including advocacy and therapy access, strategies to sustain and strengthen pre-clinical programs, and network sustainability and strategic planning.