As a part of the NMD4C’s clinical research work pillar, we are supporting the development and training on validated NMD outcome measures. Considering the evolving therapeutic landscape of SMA and the need for high-quality real-world data, convening clinicians to discuss and train on nationally agreed-upon outcome measures (OM) will enhance our capacity to uncover significant disease trajectory patterns and therapy responses. We are pleased to share an opportunity for physiotherapists and occupational therapists to attend our first training session of this kind for outcome measures in Spinal muscular atrophy (SMA). 

This is a French-language interactive training session for physiotherapists and occupational therapists that evaluate outcome measures in patients with SMA, to standardize assessment practices in SMA, organized by the RQAS (réseau québécois de l’amyotrophie spinale) committee in collaboration with Muscular Dystrophy Canada, and the NMD4C. 

To register for this training session, please visit: https://musclefr.crowdchange.ca/54286 

Agenda 

• 8 AM: Breakfast 
• 8:50 AM: Welcome Speech 
• 9 AM: Testimony of a parent of a child with spinal muscular atrophy 
• 9:10 AM: Chop‑INTEND (questions, discussions, consensus) 
• 10:15 AM: Coffee Break 
• 10:30 AM: ATEND (questions, discussions, consensus) 
• 11:40 AM: 6MWT (questions, discussions, consensus) 
• 12:15 PM: Lunch 
• 1:15 PM: Testimony of an adult with spinal muscular atrophy 
• 1:25 PM: Hammersmith (questions, discussions, consensus) 
• 2:30 PM: Coffee Break 
• 2:45 PM: RULM (questions, discussions, consensus) 
• 3:55 PM: Summary and Next Steps 
• 4:15 PM: Closing remarks 

To complement this training session, we will host an English-language training on standardizing assessment practices in SMA outcome measures later in 2024, which will include the learnings from the March training session in Quebec. We will reach out to share more information on this English-language training session when details are available. 

If you have any questions about the French training session in March, please contact Marie-Helene Bolduc for more information.