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: Rodrigues, Miriam; Bullivant, JoAnne; Hodgkinson, Victoria; TREAT-NMD Registry Curators; Jagut, Marlène; Straub, Volker; ...

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: Roxburgh, Richard; Rodrigues, Miriam; Hodgkinson, Victoria; Korngut, Lawrence; Schoser, Benedikt; Montagnese, Federica; ...

Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease.

Rodrigues, Miriam; Roxburgh, Richard; Schoser, Benedikt; Segovia, Sonia; Shatillo, Andriy; Thiele, Simone; Tournev, Ivailo; van Engelen, Baziel; Vohanka, Stanislav; Hanns, Lochmüller Source: Orphanet J Rare ...

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