FAIRification of DM registries for federated analysis - Intra-Registry Conceptual Mapping and Inter-Registry Mapping: Strategy and Activities

Presentation to European Neuro Muscular Center (ENMC) Workshop # 287 28-30 March 2025 Harmonisation and federated analysis of Myotonic Dystrophy registries to model heterogeneous disease trajectories. Organisers: Prof. P. ‘t Hoen (Netherlands), Prof. C. Faber (Netherlands), Prof. N. Johnson (USA), Dr G. Bassez (France). This presentation describes how the FAIR Principles are being applied to a variety of Neuromuscular Dystrophy registreis, and how these are then available for federated query and analytics.