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A new international study highlights a critical gap in the awareness and management of bone strength in individuals with neuromuscular disorders (NMDs). Despite the well-established link between NMDs and impaired bone health, both clinicians and patients report shortcomings in knowledge, monitoring, and treatment strategies. These findings call for better education, clearer clinical guidelines, and more coordinated care approaches.
Bone strength is often compromised in individuals with NMDs, which can lead to fractures and other complications. However, managing bone health in this patient group is not always given adequate attention in clinical practice. This study set out to explore how much clinicians and patients know about bone strength issues in NMDs, and how well bone health is currently being managed.
The study, conducted by Marie Kruse, Bas Olde Dubbelink, Leanne Ward (Canada) and Nicol Voermans, is published in the Journal of the Neurological Sciences. The research is a collaboration between the Department of Neurology at Radboudumc and the EURO-NMD Bone Strength Study Group.
Insights from clinicians
The survey among 52 healthcare professionals working within the European Reference Network for Neuromuscular Disorders (ERN EURO-NMD) found that awareness of bone fragility was generally high. Most clinicians reported that they routinely ask about fracture history during medical intakes. However, bone strength was assessed at the time of diagnosis only about half of the time, and during follow-up visits in just over half of the cases. Many clinicians also indicated that their training in bone health management was limited, with half rating their education on this topic as poor or very poor. Treatment approaches varied widely, and care was often not organized within a multidisciplinary team structure.
The patient survey, which involved 581 individuals, revealed a different perspective. Many patients were not receiving care in specialized centers, and their awareness and management of bone strength ranged from poor to moderate. Treatment practices varied considerably, and overall care often lacked consistency. These findings suggest a disconnect between clinical practices and patient experiences.
Toward clinical improvement
Improved bone strength management in people with NMDs can contribute to a lower prevalence of fragility fractures, which can significantly improve their quality of life. The authors stress the need for better integration of bone health strategies into routine NMD care and emphasize that these findings provide a foundation for refining clinical guidelines and shaping future research.
This research is part of Radboudumc Research Program: Neuromuscular disorders: rare heterogeneous disorders calling for personalized care
About the publication
Kruse, M.T.A. & Olde Dubbelink, B.A.S. & Kroneman, M. & Groot, I. & Schlüter, S. & de Visser, Marianne & Evangelista, T. & Moretti, Antimo & Weber, D. & Ward, L.M. & Voermans, Nicol. (2025). Awareness of bone strength in patients with neuromuscular disorders: ERN EURO-NMD clinician survey and European patient survey. Journal of the Neurological Sciences. 472. 123420. 10.1016/j.jns.2025.123420.
