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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.
Bjorn Lindvall; Elizabeth Luebbe; Anna Lusakowska; Radim Mazanec; Giovanni Meola; Lianna Orlando; Masanori P Takahashi; Stojan Peric; Jack Puymirat; Rakocevic-Stojanovic, Vidosava; Miriam Rodrigues ...