Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries

por dos Santos Vieira, Bruna, Bernabé, César H., Zhang, Shuxin, Abaza, Haitham, Benis, Nirupama, Cámara, Alberto, Cornet, Ronald, Le Cornec, Clémence M. A., ’t Hoen, Peter A. C., Schaefer, Franz, van der Velde, K. Joeri, Swertz, Morris A., Wilkinson, Mark D., Jacobsen, Annika, Roos, Marco
Publicado 2022

Semantic modelling of common data elements for rare disease registries, and a prototype workflow for their deployment over registry data

por Kaliyaperumal, Rajaram, Wilkinson, Mark D., Moreno, Pablo Alarcón, Benis, Nirupama, Cornet, Ronald, dos Santos Vieira, Bruna, Dumontier, Michel, Bernabé, César Henrique, Jacobsen, Annika, Le Cornec, Clémence M. A., Godoy, Mario Prieto, Queralt-Rosinach, Núria, Schultze Kool, Leo J., Swertz, Morris A., van Damme, Philip, van der Velde, K. Joeri, Lalout, Nawel, Zhang, Shuxin, Roos, Marco
Publicado 2022