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Affiliation to the Treat-NMD Consortium Using an Agreed Minimum Dataset Allows Small Registries and Large Registries to Collaborate Together

Last updated on 5-1-2021 by Pierre Daubresse
Ziekten en gezondheid in kaart brengen  

Scientific poster, presentation or proceeding

Engels

SCIENSANO

Auteurs

Richard Roxburgh; Miriam Rodrigues; Victoria Hodgkinson; Lawrence Korngut; Benedikt Schoser; Federica Montagnese; Stephan Wenninger; Sonia Segovia; Jordi Diaz-Maera; Rasha El Sherif; Hiroto Takada; Kristina Kastreva; Ivailo Tournev; Stanislav Vohanka; Radim Mazanec; Ben Porter; Chiara Marini Bettolo; Vidosava Rakocevic Stojanovic; Stojan Peric; Marjan Cosyns; Sopiko Digmelashvili; Damjan Osredkar; Tanja Golli; Harumasa Nakamura; Massanori Takahashi; Anne-Berit Ekström; Anna Lusakowska; Anna Kaminska; Marie De Antonio; Guillaume Bassez; Hannah Murray; Helen Walker; Craig Campbell; Myotonic Dystrophy TREAT-NMD Working Group

Trefwoorden

  1. Belgium neuromusculars diseases registry
  2. BNMDR
  3. Myotonic dystrophy
  4. TREAT-NMD
Article written during project(s) : 

Samenvatting:

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.
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