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EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders.

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Bibliographic Details
Title: EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders.
Authors: Atalaia, Antonio1 (AUTHOR) antonio.marques-atalaia@inserm.fr, Wandrei, Dagmar2 (AUTHOR), Lalout, Nawel3,4 (AUTHOR), Thompson, Rachel5 (AUTHOR), Tassoni, Adrian2 (AUTHOR), 't Hoen, Peter A. C.3 (AUTHOR), Athanasiou, Dimitrios6 (AUTHOR), Baker, Suzie-Ann6 (AUTHOR), Sakellariou, Paraskevi7 (AUTHOR), Paliouras, Georgios7 (AUTHOR), D'Angelo, Carla8 (AUTHOR), Horvath, Rita9 (AUTHOR), Mancuso, Michelangelo10 (AUTHOR), van der Beek, Nadine11 (AUTHOR), Kornblum, Cornelia12 (AUTHOR), Kirschner, Janbernd13 (AUTHOR), Pareyson, Davide14 (AUTHOR), Bassez, Guillaume15 (AUTHOR), Blacas, Laura16 (AUTHOR), Jacoupy, Maxime16 (AUTHOR)
Source: Orphanet Journal of Rare Diseases. 2/14/2024, Vol. 19 Issue 1, p1-15. 15p.
Database: Academic Search Ultimate
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Description
ISSN:17501172
DOI:10.1186/s13023-024-03059-3