TREAT-NMD Global Registry Network

Provided by TREAT-NMD


The TREAT-NMD Global Registry Network brings together independent neuromuscular diseases (NMD) patient registries from across the world. The federated network currently has 64 registry members (either NMD- or disease-specific), who, together are collecting data on approximately 80,00 NMD patients.

Working together allows registries to provide data on larger groups of patients, to share learning between registries, and benefit from efficiencies in centralised contracting etc. Importantly, registries retain ownership and control of their data.

TREAT-NMD coordinates this activity, and provides research communication support (e.g. to write abstracts, posters, and publications) and facilitates global registry data enquiries and projects (including statistical analysis, contracting and assurance provision).

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