Abstract

Background: The Neuromuscular Disease Network for Canada (NMD4C) aims to improve the care of Canadians with neuromuscular diseases. It has identified a need to support clinicians in implementing clinical guidelines with the use of checklists for initial evaluation and clinical follow-ups. The objective of the study was to develop a pragmatic management checklist to support clinical guidelines for diagnosis and follow-up of myotonic dystrophy type 1 (DM1). Methods: A practice-based DM1 checklist will be reviewed by a panel of 35 experts using an online survey. The survey has been drafted using the Appraisal of Guidelines Research and Evaluation tool for assessing Recommendation Excellence (AGREE-REX). The experts will rate: (1) the quality of each checklist recommendation, and (2) the applicability of each recommendation based on their clinical setting. Scores will be compiled and discussed among experts to achieve consensus. Results: The compiled checklist items were organized into three sections: (1) initial evaluation, (2) follow-up visit and (3) general treatment recommendations. Feedback from experts across Canada, results on feasibility, and a finalized checklist will be presented. Conclusions: The development of a feasible treatment checklist is a useful KT tool that DM1 experts across Canada could apply in their own clinical settings.

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