We hosted the first WMS Myology Café of 2026 on 22 January and brought together myologists and neuromuscular professionals from Asia, Africa, Europe, North America, and Latin America for an inspiring exchange of ideas and experiences.

Hosted by the WMS Myology Developments Across the World Committee, the session marked the launch of a new talk series focusing on regional approaches to NMD care and patient registries. We were delighted to welcome Miriam Rodrigues the TREAT-NMD, TGDOC chair, and Director of the New Zealand Neuromuscular disorders Registry, who shared valuable insights into the TREAT-NMD registries and their real-world impact.

Miriam kindly offered her support to any colleague interested in establishing a national registry, either by facilitating contact with TREAT-NMD or through direct communication with her by email and provided the following summary of the Myology Cafe session: 

"The presentation outlined the role of TREAT-NMD as a global network established in 2007 to accelerate the development of effective treatments and improve diagnosis and care for people with neuromuscular diseases worldwide. I explained how patient registries addressed key challenges in rare disease research by enabling trial recruitment, providing real-world data, and supporting post-authorisation studies. The TREAT-NMD Global Registry Network is a coordinated, inclusive, and sustainable system that allows any neuromuscular disease registry to join, using harmonised datasets, agreed SOPs, and shared infrastructure to deliver high-quality, longitudinal, patient-level data for academic and commercial research.

"As well as giving a brief overview of disease-specific core datasets developed for Duchenne muscular dystrophy, limb-girdle muscular dystrophy, and spinal muscular atrophy, I also spoke about the ongoing dataset revisions for myotonic dystrophy and facioscapulohumeral muscular dystrophy as well as the 'standard neuromuscular disease dataset' which has been introduced to support registries covering multiple or other neuromuscular conditions. A case example, Pūnaha Io – the New Zealand Neurogenetic Registry & Biobank, demonstrated how a nationally coordinated, internationally networked registry facilitated prevalence and natural history studies, clinical trial recruitment, and access to treatments. The presentation concluded that such registries had effectively supported research, contributed to global projects, improved trial recruitment in rare diseases, and provided a valuable resource for education and academic work. The discussion that followed centred around registries, the support available through TREAT-NMD, and the role the network might have in bringing clinical trials to countries in South America and Africa."

Colleagues from Latin America and Africa highlighted the need for TREAT-NMD to play a stronger advocacy role with pharmaceutical companies, supporting the development and sustainability of local registries and encouraging the inclusion of these regions in clinical trials, particularly in countries with large neuromuscular disease populations.

The Myology Café continues to offer a friendly platform to foster collaboration, shared knowledge, and a more inclusive global myology community.

For more information about the Myology Café, including dates of future meetings, please visit the Myology Café page of the WMS website.