Affiliation to the Treat-NMD Consortium Using an Agreed Minimum Dataset Allows Small Registries and Large Registries to Collaborate Together [1]
Scientific poster, presentation or proceeding
Anglais
SCIENSANO
Auteurs
Richard Roxburgh [3]; Miriam Rodrigues [4]; Victoria Hodgkinson [5]; Lawrence Korngut [6]; Benedikt Schoser [7]; Federica Montagnese [8]; Stephan Wenninger [9]; Sonia Segovia [10]; Jordi Diaz-Maera [11]; Rasha El Sherif [12]; Hiroto Takada [13]; Kristina Kastreva [14]; Ivailo Tournev [15]; Stanislav Vohanka [16]; Radim Mazanec [17]; Ben Porter [18]; Chiara Marini Bettolo [19]; Vidosava Rakocevic Stojanovic [20]; Stojan Peric [21]; Marjan Cosyns [22]; Sopiko Digmelashvili [23]; Damjan Osredkar [24]; Tanja Golli [25]; Harumasa Nakamura [26]; Massanori Takahashi [27]; Anne-Berit Ekström [28]; Anna Lusakowska [29]; Anna Kaminska [30]; Marie De Antonio [31]; Guillaume Bassez [32]; Hannah Murray [33]; Helen Walker [34]; Craig Campbell [35]; Myotonic Dystrophy TREAT-NMD Working Group [36]Mots-clés
Article written during project(s) :
Résumé:
Treat-NMD is an international collaboration aimed at bringing treatments to people with neuromuscular diseases. The TREAT-NMD Myotonic Dystrophy Working Group was established in 2017 specifically to develop collaborations amongst TREAT-NMD DM registries. The aim of this study was to further develop the TREAT-NMD Global Registry Network by highlighting the registries that are affiliated and full members of TREAT-NMD and to explore the strengths and weaknesses of the collaboration.