With 218 attendees, 55 speakers, and seven sponsors, the inaugural CPD-accredited Defeat Duchenne Canadian Conference was a huge success!
Defeat Duchenne Canada has partnered with Muscular Dystrophy Canada and the Neuromuscular Disease Network for Canada (NMD4C), to develop the first national continued professional development (CPD) accredited summit solely focused on Duchenne muscular dystrophy (DMD) for health care providers across Canada.
The theme for the event in 2021 was ‘Addressing DMD Standards of Care (SoC) in Canada’. Bringing together subject matter experts from both paediatric and adult care, this conference focussed on a comprehensive overview of the Canadian adaptation to the Lancet international Duchenne standards of care considerations published in 2018.
The conference included:
- Two surveys capturing the Canadian standard of care landscape:
- #1: Focused on multi-disciplinary care teams with 163 respondents
- #2: Focussed on individuals affected by Duchenne with 94 respondents
- Three educational sessions across six days covering nine topics:
- Session 1: Endocrinology, Osteoporosis, Cardiac, and Pulmonary Management in Duchenne (June 2021)
- Session 2: Neuromuscular Management and Transition from Pediatric to Adult Care in Duchenne (September 2021)
- Session 3: Orthopedic, Rehabilitation, and Psychosocial Management in Duchenne, plus Duchenne and the Brain (December 2021)
We are now working towards publishing a set of recommendations addressing identified care gaps. This publication will be made available in 2022 to help improve resourcing and knowledge transfer, ultimately shaping the future of care for patients and families living with Duchenne in Canada.
A special thank you to our conference committee, chairs, speakers and panellists:
Dr. Kathryn Selby, Dr. Hanns Lochmüller, Dr. Craig Campbell, Dr. Nicholas Chrestian, Dr. Homira Osman, Dr. Erin Beattie, Nicola Worsfold, Rochelle ten Haaf, James Davis, and Kate Miller.
- Respirology Management: Drs. Reshma Amin, Jeremy Road, David Zielinski, and Marta Kaminska
- Cardiology Management: Drs. Derek Human, Mariana Lamacie, Emilie Jean-St-Michel, Michael Khoury, and Andres Klein
- Endocrinology Management: Drs. Leanne Ward, Sabrina Gill, Stasia Hadjiyannakis, and Annie Sbrocchi
- Neuromuscular Management: Drs. Kathy Selby, Hanns Lochmüller, Craig Campbell, James Dowling, Hugh McMillan, Eric Hoffman, Suzanne Salsman, Mike Berger, Kerri Schellenberg, and Nadim Jiwa. Dr. Homira Osman (MDC), Alex Printis (dietitian) and Nicola Worsfold (Jesse’s Journey)
- The Transition from Pediatric to Adult Care: Drs. Laura McAdam, Colleen O’Connell, Monique Taillon, Sandrine Boueilh, Hana Alazem, and Lindsay Hubenig. Bhavnita Mistry (research manager/coordinator), Debra Chiabai and Nancy Klinkhamer (DMD parents), and Mike Klinkhamer (adult with DMD)
- Orthopedic Management: Drs. Chris Reilly, Patricia Larouche, and Hernan Gonorazky and Fatima Vido-Vicchio (physiotherapist)
- Rehabilitation Management: Drs. Sue Dojeiji, Jordan Sheriko, Anna McCormick, and Michael Berger. Charise MacDonald (occupational therapist), Sarah Moore (therapeutic recreation specialist), Khalid Mahdi (adult with DMD), and Nicola Worsfold (Jesse’s Journey)
- Duchenne & the Brain: Professor Francesco Muntoni, Dr. Veronica Hinton, Dr. Hugh McMillan, and Debra Chiabai (DMD parent)
- Psychosocial Management: Drs. Jean Mah, Stephanie Plamondon, Natalie Truba, and Amy McPherson. Camara van Breemen (nurse practitioner), Zoe Schwartz (pediatric social worker), and Debra Chiabai (DMD parent)