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Zoekresultaten - 3 results
International collaboration to improve knowledge on myotonic dystrophy type 2
Korngut, Lawrence; Marlène Jagut; Schoser, Benedikt; Forbes, Robin; Poll, Annie; Roxburgh, Richard Source: Journal of Neuromuscular Diseases, Volume 11, Issue 6 (2024) Keywords: age at onset ambulation ...
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 ...