Knowledge Translation Working Group

Led by Dr. Cynthia Gagnon, the Knowledge Translation (KT) working group provides various KT products for the neuromuscular community. The objectives of our integrated knowledge translation (IKT) plan is to raise the standard of care for NMD and improve access to NMD therapies across Canada through the development, dissemination, and implementation of KT products (including clinical care guidelines) tailored to various audiences.

KT products in development include the adaptation and creation of clinical practice guidelines for NMDs, consensus statements for NMD treatments, and decision aids. The KT working group applies best practices in KT to all network activities, and are responsible for network communication channels including curation of the website, social media, and newsletter. 

 

Clinical Care Guidelines

Clinical practice guidelines and other informational products for individuals affected by NMDs are important tools to help guide clinical practice and shared decision making and thereby improve outcomes for Canadians living with NMDs. Canadian neuromuscular clinicians and scientists have contributed to the development of guidelines for several NMDs, yet challenges remain: a lack of comprehensive clinical practice guidelines that address the role of each member of the multidisciplinary team, a lack of awareness of available KT products, and availability of summaries which provide this information for clinicians in a quick digestible format. To address these gaps, the KT group performed a landscaping project to identify neuromuscular guidelines that have already been developed. A document produced by the KT group describing our process for choosing clinical guidelines for adaptation is available.

Further, many KT resources that are available to the NM community provide clinical care recommendations with a regional lense; the KT team works to adapt recommendations to a Canadian context where necessary through consultation with leading Canadian experts in NMDs. One example of this can be found in the group’s 2021 publication providing guidance on gene replacement therapy in Spinal Muscular Atrophy.

 

Education

The KT team is producing a webinar series which will provide an overview of KT plan implementation from conception to execution. The KT team draws from their own experience and recruits talented KT experts as presenters throughout this series which will take place over the fall of 2021 and spring of 2022.

Find a recording of the first session, ‘Setting up the basics for a successful knowledge translation plan’ here:

Find a recording of the third session, 'Knowledge Translation in Action' here:

Ongoing Work

The KT team will continue to develop the consulting services for NMD4C members through webinars and website resources, and continue developing shared-decision making tools around treatment decisions including an SMA decision-aid. The KT team will also create summary clinical practice guidelines in the form of infographics, develop/adapt clinical practice guidelines for oculopharyngeal muscular dystrophy and myotonic dystrophy, and will also create a series of “Five things to know” style papers for different NMDs quarterly.

Further Reading on Guidelines and Knowledge Translation

  1. Oskoui, M, Gonorazky, H, McMillan, HJ, Dowling, JJ, Amin, R, Gagnon, C et al.. Guidance on Gene Replacement Therapy in Spinal Muscular Atrophy: A Canadian Perspective. Can J Neurol Sci. 2022.49 (3)398-401 PMID:34082851

Group Members

Clinical Care Guidelines in NMD Infographics

Promoting Sexuality and Intimate Relationships in Adults with a Neuromuscular Disease in Occupational Therapy

KT infographic logo

Consensus-Based Care Recommendations for Children with Myotonic Dystrophy Type 1 (DM1)

Clinical practice guideline in NMD infographic logo