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...
Applications Open for New NMD4C Collaborative Research Training Awards!
The NMD4C is excited to announce a new program for neuromuscular research trainees that will support collaboration opportunities between Canadian research labs.
NMD4C Members Receive Dr David Green Awards from Muscular Dystrophy Canada
We are excited to share that several NMD4C investigators and members have been honored with a Dr David Green Award from Muscular Dystrophy Canada!
Lower Extremity Muscle Strengthening Program in Myotonic Dystrophy Type 1 from Groupe de recherche interdisciplinaire sur les maladies neuromusculaires
The Groupe de recherche interdisciplinaire sur les maladies neuromusculaires (GRIMN) recently created a video aimed at health professionals that provides an in-depth explanation of the Myotonic dystrophy (DM1) training parameters used in their studies.
Fifth Annual Clinical Fellowship Competition from NMD4C and MDC Opens May 1st
The NMD4C and MDC clinical neuromuscular fellowship competition is accepting applications for the 2026 competition until June 12, 2025.
