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Zoekresultaten - 3 results

Collaborative data collection by TREAT-NMD Registries to support post-marketing surveillance in Spinal Muscular Atrophy

Publication Type: Scientific poster, presentation or proceeding Authors: Miriam Rodrigues; JoAnne Bullivant; Victoria Hodgkinson; TREAT-NMD Registry Curators; Marlène Jagut; Volker Straub; Nathalie ...

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 ...

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