Bone strength is reduced In various neuromuscular disorders (NMDs). We aimed to assess the awareness and practice of bone strength management in NDMs among clinicians and patients. We performed two online surveys; among health care providers (HCPs) of the European Reference Network for Neuromuscular Disorders (ERN EURO-NMD) and among patients. The survey among 52 HCPs showed that awareness of potentially impaired bone strength in people with NMDs was reasonable to good: the vast majority of HCPs asked often or almost always about bone fractures during history-taking (81 %). Bone strength was less often assessed: often or almost always at diagnosis (50 %) and at follow-up (58 %). Medical training on this topic was considered poor to very poor in 50 % of HCPs. Prevention and treatment of reduced bone strength was variable and multidisciplinary care was sub-optimal. The survey among 581 patients provided important additional insights. Many patients were followed-up outside ERN EURO-NMD centers and treatment was variable. These parallel surveys provided a broad view on the awareness and management of bone strength in people with NMDs. The findings are expected to increase the appreciation of this important aspect of NMD care, and direct future research foci and care guidelines.

Department of Medical and Surgical Specialties and Dentistry University of Campania Luigi Vanvitelli Naples Italy

Department of Neurology Amsterdam University Medical Centre the Netherlands

Department of Neurology Donders Institute for Brain Cognition and Behaviour Radboud University Medical Center Nijmegen the Netherlands

Department of Pediatrics Division of Endocrinology and Metabolism Children's Hospital of Eastern Ontario and University of Ottawa Ottawa ON Canada

Department of Pediatrics Endocrinology The Children's Hospital of Philadelphia and the Perelman School of Medicine at the University of Pennsylvania USA

Diagnosegruppe Myositis Germany

Faculty of Medicine University of Groningen the Netherlands; Department of Neurology Donders Institute for Brain Cognition and Behaviour Radboud University Medical Center Nijmegen the Netherlands

Lt gen Van Heutszlaan 63743 JN Baarn The Netherlands

Unité de Morphologie Neuromusculaire Institut de Myologie Paris France

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