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

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 rare disea...

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Detalles Bibliográficos
Autores principales: Ambrosini, Anna, Calabrese, Daniela, Avato, Francesco Maria, Catania, Felice, Cavaletti, Guido, Pera, Maria Carmela, Toscano, Antonio, Vita, Giuseppe, Monaco, Lucia, Pareyson, Davide
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2018
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6172847/
https://www.ncbi.nlm.nih.gov/pubmed/30286784
http://dx.doi.org/10.1186/s13023-018-0918-z

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6172847/
https://www.ncbi.nlm.nih.gov/pubmed/30286784
http://dx.doi.org/10.1186/s13023-018-0918-z

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