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Affiliation to the Treat-NMD Consortium Using an Agreed Minimum Dataset Allows Small Registries and Large Registries to Collaborate Together
Publication Type: Scientific poster, presentation or proceeding Authors: Richard Roxburgh; Miriam Rodrigues; Victoria Hodgkinson; Lawrence Korngut; Benedikt Schoser; Federica Montagnese; Stephan ...
Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease.
Jorge Alberto Diaz Manera; Celine Dogan; Rasha El Sherif; Barbara Fossati; Caroline Graham; James Hilbert; Kristinia Kastreva; En Kimura; Lawrence Korngut; Anna Kostera-Pruszczyk; Christopher Lindberg; ...