The transition from childhood to adulthood in neuromuscular disorders: a European perspective

The European reference network EURO-NMD conducted a survey to assess the needs and processes involved in the transition of patients with a neuromuscular disorder from childhood to adulthood:

  • 67 healthcare professionals from twenty different European countries took part in this questionnaire-based study,
  • the topics covered included the arrangements for this transition, the availability of training and psychological support, and the barriers to its implementation,
  • a third of respondents reported having a specific structure in place to manage the child-to-adult transition within their centres,
  • only 18% of them had received specific training,

The EURO-NMD network highlights numerous areas for improvement that could address the shortcomings of the system and the lack of harmonisation in this field.

 

Transition from childhood to adulthood in neuromuscular disorders: results from the ERN EURO-NMD survey. Evangelista T, Ali H, Handberg C et al. Orphanet J Rare Dis. 2025 Dec.