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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.

Richard Roxburgh; Benedikt Schoser; Sonia Segovia; Andriy Shatillo; Simone Thiele; Ivailo Tournev; Baziel van Engelen; Stanislav Vohanka; Hanns Lochmüller Source: Orphanet J Rare Dis, Volume 13, Issue ...

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