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qualitative analysis
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physician-patient communication
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information preferences
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advanced care planning
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Review
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Registry Hub
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Registry
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2024
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2021
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EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders
2024 .
Atalaia, Antonio
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Wandrei, Dagmar
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Lalout, Nawel
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Thompson, Rachel
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Tassoni, Adrian
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’t Hoen, Peter A. C.
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Athanasiou, Dimitrios
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Baker, Suzie-Ann
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Sakellariou, Paraskevi
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Paliouras, Georgios
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D’Angelo, Carla
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Horvath, Rita
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Mancuso, Michelangelo
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van der Beek, Nadine
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Kornblum, Cornelia
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Kirschner, Janbernd
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Pareyson, Davide
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Bassez, Guillaume
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Blacas, Laura
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Jacoupy, Maxime
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Eng, Catherine
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Lamy, François
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Plançon, Jean-Philippe
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Haberlova, Jana
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Brusse, Esther
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Hoeijmakers, Janneke G. J.
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de Visser, Marianne
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Claeys, Kristl G.
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Paradas, Carmen
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Toscano, Antonio
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Silani, Vincenzo
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Gyenge, Melinda
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Reviers, Evy
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Hamroun, Dalil
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Vroom, Elisabeth
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Wilkinson, Mark D.
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Lochmuller, Hanns
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Evangelista, Teresinha
2024
http://purl.org/ontology/bibo/Article
Correction to: A double-blind, placebo-controlled, randomized trial of PXT3003 for the treatment of Charcot–Marie–Tooth type 1A
2024 .
Attarian, Shahram
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Young, Peter
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Brannagan, Thomas H.
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Adams, David
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Van Damme, Philip
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Thomas, Florian P.
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Casanovas, Carlos
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Kafaie, Jafar
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Tard, Céline
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Walter, Maggie C.
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Péréon, Yann
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Walk, David
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Stino, Amro
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de Visser, Marianne
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Verhamme, Camiel
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Amato, Anthony
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Carter, Gregory
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Magy, Laurent
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Statland, Jeffrey M.
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Felice, Kevin
2024
http://purl.org/ontology/bibo/Article
Advanced Care Planning in Parkinson's Disease: In-depth Interviews With Patients on Experiences and Needs
2021 .
Kurpershoek, Elisabeth
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Hillen, Marij A.
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Medendorp, Niki M.
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de Bie, Rob M. A.
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de Visser, Marianne
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Dijk, Joke M.
2021
http://purl.org/ontology/bibo/Article