The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage

The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage

Abstract Background The worldwide landscape of patient registries in the neuromuscular disease (NMD) field has significantly changed in the last 10 years, with the international TREAT-NMD network acting as strong driver. At the same time, the European Medicines Agency and the large federations of ra...

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Bibliographic Details
Main Authors: Anna Ambrosini, Daniela Calabrese, Francesco Maria Avato, Felice Catania, Guido Cavaletti, Maria Carmela Pera, Antonio Toscano, Giuseppe Vita, Lucia Monaco, Davide Pareyson
Format: Article
Language:English
Published: BMC 2018-10-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Neuromuscular disorders
Clinical network
Patient registries
Patient engagement
Online Access:http://link.springer.com/article/10.1186/s13023-018-0918-z

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http://link.springer.com/article/10.1186/s13023-018-0918-z

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