EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders
2024
Atalaia, Antonio | Wandrei, Dagmar | Lalout, Nawel | Thompson, Rachel | Tassoni, Adrian | 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 | Toscano, Antonio | Silani, Vincenzo | Gyenge, Melinda | Reviers, Evy | Hamroun, Dalil | Vroom, Elisabeth | Wilkinson, Mark D. | Lochmuller, Hanns | Evangelista, Teresinha | European Commission | Atalaia, Antonio [0000-0002-9345-0953] | Wandrei, Dagmar [0000-0002-8144-162X] | Lalout, Nawel [0000-0003-3707-8373] | Tassoni, Adrian [0000-0001-5392-4125] | Hoen, Peter A. C. [0000-0003-4450-3112] | Sakellariou, Paraskevi [0000-0002-9091-0053] | Horvàth, Rita [0000-0002-9841-170X] | Mancuso, Michelangelo [0000-0003-2738-8562] | van der Beek, Nadine [0000-0001-9161-3301] | Kornblum, Cornelia [0000-0002-0111-7281] | Kirschner, Janbernd [0000-0003-1618-7386] | Pareyson, Davide [0000-0001-6854-765X] | Bassez, Guillaume [0000-0002-2044-1052] | Jacoupy, Maxime [0000-0003-1841-7747] | Eng, Catherine [0000-0003-4318-2345] | Lamy, François [0000-0001-6542-1381] | Haberlova, Jana [0000-0003-2734-9715] | Brusse, Esther [0000-0002-1452-2219] | Hoeijmakers, Janneke [0000-0001-6940-0027] | de Visser, Marianne [0000-0002-5591-7452] | Claeys, Kristl [0000-0001-9937-443X] | Paradas, Carmen [0000-0002-6917-2236] | Silani, Vincenzo [0000-0002-7698-3854] | Reviers, Evy [0000-0002-6044-5234] | Hamroun, Dalil [0000-0002-4853-8227] | Vroom, Elisabeth [0000-0002-3422-2782] | Wilkinson, Mark D. [0000-0001-6960-357X] | Lochmuller, Hanns [0000-0003-2324-8001] | Evangelista, Teresinha [0000-0002-1329-9131] | Consejo Superior de Investigaciones Científicas [https://ror.org/02gfc7t72]
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اظهر المزيد [+] اقل [-]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.
اظهر المزيد [+] اقل [-]This project was co-funded by the European Union’s 3rd EU Health Programme; Grant Agreement: 947598; EURO-NMD Registry—HP-PJ-2019. Total EU funding: 200,000€. Total Patients Organisations in kind contribution: 274,641.20€.
اظهر المزيد [+] اقل [-]Peer reviewed
اظهر المزيد [+] اقل [-]