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• This study documents the first characterization of cannabis use in a population composed exclusively of DM1 patients. • Cannabis use is common in DM1 patients and more than half report using cannabis to treat DM1-associated symptoms in Canada. • Patients using cannabis for therapeutic reasons reported being in worse health compared to non-therapeutic users. • Men were twice as much likely to be using cannabis than women. The treatment of myotonic dystrophy type 1 (DM1) focuses on reducing symptom burden. However, since medication often fails to produce satisfying symptom relief, some patients seek alternatives, such as cannabis, to help reduce some of these symptoms. The aim of this study was to provide an accurate profile of cannabis use among DM1 patients. Phone interviews were conducted to identify current and former users, and to assess reasons for cannabis use. Characteristics of cannabis use were also investigated. Briefly, among the 72 study participants, 22.2% currently used cannabis and a majority of them (56.9%) reported using it to relieve symptoms associated with DM1. These users, classified as therapeutic users, reported poorer health status (EQ-5D index scores: 0.532±0.230 vs. 0.823±0.208, p = 0.020; EQ-VAS scale 50.56±10.74 vs. 75.57±21.50, p = 0.009) than non-therapeutic users. Finally, differences among sex were also highlighted. While the therapeutic effects of cannabis were not explored in our study, our results support the potential role of cannabis and cannabinoids in the treatment of DM1-associated symptoms which will need to be thoroughly investigated. [ABSTRACT FROM AUTHOR]