ArticleOrphanet journal of rare diseases2025
Transition from childhood to adulthood in neuromuscular disorders: results from the ERN EURO-NMD survey.
Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
3 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Transition to adulthood in Duchenne Muscular Dystrophy: a systematic review with narrative synthesis on health systems, policies, and the role of health care providers.Frontiers in public health · 2026Pooled it
- From transfer to receipt: transition in neuromuscular disorders in the era of disease-modifying therapy.Orphanet journal of rare diseases · 2026Article
- Transition from pediatric to adult neurology care in Duchenne muscular dystrophy: a national survey of patient and physician experiences.Orphanet journal of rare diseases · 2026Article
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Authors and funding
11 authors.
Funding
Abstract
backgroundNeuromuscular diseases (NMDs) are rare, progressive conditions that require lifelong, multidisciplinary care. Advances in diagnosis and treatment have increased survival into adulthood, making the transition from paediatric to adult care a critical stage of its management. However, evidence suggests that transition practices remain inconsistent across Europe. This study aimed to map and evaluate the current transition practices for patients with NMDs across Europe.
methodsA cross-sectional survey was conducted by the European Reference Network for Rare Neuromuscular Diseases (ERN EURO-NMD) to assess current transition practices across European healthcare providers (HCPs). Sixty-seven healthcare professionals from 20 countries participated. The survey explored training provision, transition structures, professional involvement, timing, psychosocial support, and perceived barriers. Both descriptive and thematic analyses were performed.
resultsOnly 29.9% of respondents reported structured transition protocols, and fewer than one in five (17,9%) had received formal training in transition care. The age to initiate transition was reported for most centres at 17-18 years, even though most clinicians identified 15-16 years as the ideal starting point. Multidisciplinary collaboration was present in some centres but was inconsistently implemented. Barriers included insufficient staff, lack of funding, inadequate adult care services, and poor inter-team communication. Post-transfer feedback to paediatric teams was limited. Despite these challenges, 59.7% of respondents believed that ERN EURO-NMD could facilitate improvement in transition care.
conclusionsTransition care for patients with NMDs in Europe remains fragmented and under-resourced. To ensure continuity and improve outcomes, structured, multidisciplinary transition models are needed. A European roadmap, coordinated by ERN EURO-NMD, could harmonise practices, support professional training, and guide policy development across member states.
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Registered trials
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