EURO-NMD Registry: Federated FAIR Infrastructure, Innovative Technologies and Concepts of a Patient-Centred Registry for Rare Neuromuscular Disorders.
Antonio Atalaia,Dagmar Wandrei, Nawel Lalout,Rachel Thompson,Adrian Tassoni,Peter A. C. ’t Hoen, Dimitrios Athanasiou, Suzie-Ann Baker, Paraskevi Sakellariou,Georgios Paliouras, Carla D’Angelo,Rita Horvath,Michelangelo Mancuso,Nadine van der Beek,Cornelia Kornblum,Janbernd Kirschner,Davide Pareyson,Guillaume Bassez, Laura Blacas, Maxime Jacoupy, Catherine Eng, François Lamy,Jean-Philippe Plançon,Jana Haberlova,Esther Brusse,Janneke G. J. Hoeijmakers,Marianne de Visser,Kristl G. Claeys,Carmen Paradas,Antonio Toscano,Vincenzo Silani, Melinda Gyenge,Evy Reviers,Dalil Hamroun, Elisabeth Vroom,Mark D. Wilkinson,Hanns Lochmuller,Teresinha Evangelista Orphanet Journal of Rare Diseases（2024）
Key words
Registry,Registry Hub,Neuromuscular Diseases,Rare Diseases,FAIR data
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