CAN-NMD ANNUAL MEETING UPDATE
On September 23 & 24, 2015 the 2nd annual CAN-NMD meeting was held in Canada’s Capital City of Ottawa.
Dr. Lawrence Korngut, Chair of the Network, kicked off Day 1 with opening remarks followed by a series of mini-talk presentations from many of our members, both old and new, providing research and clinical care updates from across the country in neuromuscular diseases.
The talks provided great insight into what our attending members have been working on in their field. Duchenne muscular dystrophy, Charcot-Marie Tooth disease, amyotrophic Lateral sclerosis (ALS or Lou Gehrig’s disease), familial amyloid polyneuropathy, and spinal muscular atrophy were all represented in the research updates including new diagnostic tools and potential new treatments. Clinical care was also well represented with talks on knowledge sharing, enhancing care, supporting youth in clinics, new training programs and multidisciplinary approaches to rare disease diagnosis and treatment.
A sneak peek of the upcoming Neuromuscular Nation virtual social community was presented and excited attendees were invited to test the site. Neuromuscular Nation aims to be a secure place where patients and families who may never otherwise have a chance to interact with each other can connect, share, and gather information.
Day 1 ended with the inaugural edition of National Neuromuscular Disease Rounds as a multidisciplinary team from Moncton, New Brunswick presented exceptional cases encountered recently. They highlighted a multidisciplinary approach of research, diagnostic, and clinical care teams working closely together which allowed them to diagnose and treat these cases with greater success. The Moncton team aims to improve diagnosis and treatment though the integration of Next Generation Sequencing (NGS) and development of biomarkers using mRNA and NGS. They are also conducting systematic studies on familial ALS and MS (Multiple Sclerosis) in communities where a “rare” disease occurs more “frequently” in order to better understand, diagnose and educate those communities. Video of the NMD Rounds will be available soon.
The morning of Day 2 focused on knowledge translation as the CAN-NMD’s national knowledge broker, Gracia Mabaya (based at the London Health Sciences Centre in London, Ontario) presented the Network’s knowledge translation framework. This framework will be used to advance knowledge sharing and exchange in neuromuscular research, clinical care and education across stakeholder groups represented within the Network, as well as between Canadian clinical care facilities to improve overall care, and facilitate more rapid uptake of new findings from research across all centers. Examples of how the framework could be applied were provided and there was a general consensus among members on the comprehensiveness, applicability and usefulness of the framework for future Network-specific knowledge sharing and exchange initiatives.
Representatives from 5 companies in the pharmaceutical industry were also in attendance on Day 2 and participated in a round table discussion sharing ideas around forging mutually beneficial outcomes in neuromuscular disease research and clinical care.
Meeting attendees spent the afternoon within their respective task force to review progress on activities undertaken in 2015 and looked ahead to plan the work to be accomplished in 2016. Each task force presented its yearly plan to the rest of the network before a representative from Muscular Dystrophy Canada joined Dr. Korngut for closing remarks on a successful meeting. The dates for next year’s annual meeting will be finalized in the next couple of months. Watch your inbox for an opportunity to provide input on the best timing.