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| Título: | EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders |
Autor: | Atalaia, Antonio; Wandrei, Dagmar; Lalout, Nawel; Thompson, Rachel; Tassoni, Adrian; t Hoen, Peter A.C.; Athanasiou, Dimitrios; Baker, Suzie-Ann; Sakellariou, Paraskevi; Paliouras, Georgios; D'Angelo, Carla; Horvàth, Rita; Mancuso, Michelangelo; van der Beek, Nadine; Kornblum, Cornelia; Kirschner, Janbernd; Pareyson, Davide; Bassez, Guillaume; Blacas, Laura; Jacoupy, Maxime; Eng, Catherine; Lamy, François; Plançon, Jean-Philippe; Haberlova, Jana; Brusse, Esther; Hoeijmakers, Janneke; de Visser, Marianne; Claeys, Kristl; Paradas, Carmen CSIC ORCID; Toscano, Antonio; Silani, Vincenzo; Gyenge, Melinda; Reviers, Evy; Hamroun, Dalil; Vroom, Elisabeth; Wilkinson, Mark D.; Lochmuller, Hanns; Evangelista, Teresinha | Palabras clave: | FAIR data Neuromuscular Diseases Rare Diseases Registry Registry Hub |
Fecha de publicación: | 14-feb-2024 | Citación: | Orphanet Journal of Rare Diseases 19(1): e66 (2024) | Resumen: | The EURO-NMD Registry collects data from all neuromuscular patients seen at EURO-NMD's expert centres. In-kind contributions from three patient organisations have ensured that the registry is patient-centred, meaningful, and impactful. The consenting process covers other uses, such as research, cohort finding and trial readiness. | Descripción: | 15 Pág. | Versión del editor: | https://doi.org/10.1186/s13023-024-03059-3 | URI: | http://hdl.handle.net/10261/349941 | DOI: | 10.1186/s13023-024-03059-3 | E-ISSN: | 1750-1172 |
| Aparece en las colecciones: | (INIA) Artículos |
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| EURO_NMD_registry.pdf | revisión | 1,36 MB | Adobe PDF |  Visualizar/Abrir |
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