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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
Health and disease monitoring  

Scientific poster, presentation or proceeding

English

SCIENSANO

Authors

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

Keywords

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

Abstract:

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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Associated health topics:

Health and disease monitoring

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