New Course ‘Skills for Patient Oriented Research’ Added to ImPORTND Training Platform

The third and final module of our patient-oriented research training platform, ImPORTND, is now available! ‘Skills for Patient-Oriented Research’ teaches specific skills to help with patient-oriented research (POR), including how to develop an effective patient engagement plan, share and listen to patient stories, and evaluate project engagement.

Register for 'Skills for Patient-Oriented Research' here!

 

ImPORTND Platform

The ImPORTND platform offers online, self-directed, free neuromuscular-specific training on how to conduct research that is informed by, and most meaningful to individuals living with neuromuscular diseases and are designed for all members of the study team: including researchers, lab staff, and patient- and family partners. ImPORTND consists of three modules: Readiness for Patient-Oriented Reseach, Inclusion/Diversity/Equity/Accessibility (IDEA), and Skills for Patient-Oriented Research. All are available in English (imPORTND) and French (inFORMERMN). Learn more about the development of these training modules on the NMD4C website.

 

Free Training and Support Services

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 both 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.

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.

 

Take the Training

Begin the training here! 

If you have any questions about the training, please contact network manager Erin Beattie at . 

ImPORTND logo with text reading 'new module - skills for patient oriented research'

Read next...

06-2026 NMD4C Publication

New Publication from the NMD4C Clinical Trial Network Strengthens Trial Capacity in Canada

We are pleased to share a new publication from the NMD4C Clinical Trial Network led by Kerri Lynn Schellenberg, Homira Osman, Maria Masnata, Rhiannon Hicks, Corinne Kagan, Ana Stosic, Stacey Lintern, Erin Beattie, Drs. Hanns Lochmüller, Craig Campbell, and Jean K Mah. This work focuses on the implementation of a coordinated Canadian neuromuscular clinical trial network to enhance trial readiness, capacity, and access in rare disease research.

Canadian-Led Phase II Studies Advance Vamorolone Evidence in Duchenne Muscular Dystrophy

Canadian-Led Phase II Studies Advance Vamorolone Evidence in Duchenne Muscular Dystrophy

NMD4C investigators contributed to two phase II studies evaluating vamorolone in boys with Duchenne muscular dystrophy across early childhood and adolescence, demonstrating safety, favorable pharmacokinetics, and potential efficacy. Led by Dr. Jean Mah and conducted across Canadian clinical trial sites with national and industry collaborators, the findings supported Health Canada approval of vamorolone as the first treatment for DMD in Canada. Leaders from both the clinical and patient advocacy communities, including Defeat Duchenne Canada, highlighted the impact of collaboration among patients, families, clinicians, and researchers in advancing care and improving access to new therapies.

06-2026 NMD4C AFC Program Launch & September Workshop

Advancing AFC in Neuromuscular Medicine: Program Launch & September Workshop

The Royal College has approved National Training Standards for the AFC in Neuromuscular Medicine, creating a formal pathway to recognize enhanced competence with the DRCPSC credential. This designation establishes a national training standard, supports portable certification, and strengthens clinical capacity across Canada. PGME offices can now apply to offer accredited AFC programs, with a goal of five programs submitting applications by the end of 2026.