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

@inproceedings{Ambrosini2018TheIN,
  title={The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage},
  author={Anna Ambrosini and Daniela Paola Calabrese and Francesco Maria Avato and Felice Catania and Guido Cavaletti and Maria Carmela Pera and Antonio Rafael Quintero Toscano and Giuseppe Vita and Lucia Monaco and Davide Pareyson},
  booktitle={Orphanet journal of rare diseases},
  year={2018}
}
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 disease patient organizations (POs), such as EURORDIS, contributed to a great cultural change, by promoting a paradigm shift from product-registries to patient-centred registries. In Italy, several NMD POs… CONTINUE READING
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