Affiliation to the Treat-NMD Consortium Using an Agreed Minimum Dataset Allows Small Registries and Large Registries to Collaborate Together
Roxburgh, Richard Rodrigues, Miriam Hodgkinson, Victoria Korngut, Lawrence Schoser, Benedikt Montagnese, Federica Wenninger, Stephan Segovia, Sonia Diaz-Maera, Jordi El Sherif, Rasha
Roxburgh, Richard
Rodrigues, Miriam
Hodgkinson, Victoria
Korngut, Lawrence
Schoser, Benedikt
Montagnese, Federica
Wenninger, Stephan
Segovia, Sonia
Diaz-Maera, Jordi
El Sherif, Rasha
Citations
Altmetric:
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.
Description
Date
2019-06-11
Journal Title
Journal ISSN
Volume Title
Publisher
IDMC
Chapter title
Publication type
Scientific poster, presentation or proceeding
Research Projects
Organizational Units
Journal Issue
Keywords
Belgium neuromusculars diseases registry, BNMDR, Myotonic dystrophy, TREAT-NMD