Publication
One registry, many values: trade-offs in building a rare cancers data infrastructure
C. Egher, S. van Hees, W. Boon, A. Trama, Jana Halamkova, Vit Novacek, Jean-Yves Blay, Alizée Diatchenko, Claire Chemin, Carlos Castresana, Kim Moon, Siri Larønningen, Andreas Muth, Marta Berndsen, Unai Zulaika Zurimendi, Franco Mercalli, Iwona Lugowska, Magdalena Rosinska, Aitor Almeida Escondrillas, Aritz Bilbao Jayo, Giuseppe Fico, Laura Lopez-Perez, Eugenio Gaeta, Itziar Alonso, Alejandro Alonso, Giorgio Cangioli, Catherine Chronaki, Roberta Gazzarata, Sébastien Ziegler, Vasiliki Tsiompanidou, Vincenzo Falanga, Federica Saccà, Daniele Pavia, Elena Mancuso, Barbara Sanavio, Ioanna Drympeta, Athanasios Patenidis, Konstantinos Votis, Alberto Lavelli, Soumitra Ghosh, Frank Martin, Eva Mezei, Bertrand Baujat, Alice Parey, Sacha Seksik, Judith Leblanc, Javier Martin Broto, Nadia Hindi, Antonio Herrero, David Wennergren, Anna Rosén, Andreas Dynefors Hallberg, Anna Sikora-Koperska, Grzegorz Ostrek, Paweł Teterycz, Katerina Kopeckova, David Feldmar, Adam Lukac, Michal Opava, Olga Zaikova, Jan F. Nygård, Stefan Mattheis, Pablo Parente, Xabier Jimenez Gomez, Salvatore Provenzano, Stefano Cavalieri, Paolo Lasalvia, Elena Martinelli, Paolo Baili, Roberto Lillini, Rafał Szmuc, Jan Poleszczuk, Robert Lugowski, Erik Cornelisse, Maarten Kollenstart, Giovanni Tonon, Gennaro Ciliberto, Lidia Villanova, Xose Fernandez, Maria Luisa Clementi, Chiara Sabelli
ESMO Rare Cancers, June 2026, Elsevier
DOI: 10.1016/j.esmorc.2026.100520