Semantic modelling of common data elements for rare disease registries, and a prototype workflow for their deployment over registry data. - Rajaram Kaliyaperumal; Mark D. Wilkinson; Pablo Alarcón Moreno; Nirupama Benis; Ronald Cornet; Bruna dos Santos Vieira; Michel Dumontier; César Henrique Bernabé; Annika Jacobsen; Clémence M. A. Le Cornec; Mario Prieto Godoy; Núria Queralt-Rosinach; et al. (J. Biomed. Semant., 2022)

Surveyed common data access policies preferences amongst European Reference Networks. - Alberto Cámara Ballesteros; Nirupama Benis; César Henrique Bernabé; Inés de Oliveira Coelho; Clémence M. A. Le Cornec; Aylin Demir; Bruna dos Santos Vieira; Jose Antonio Ramírez; K. Joeri van der Velde; Shuxin Zhang; Ronald Cornet; Annika Jacobsen; et al. (SWAT4HCLS, 2023)

A Resource for Guiding Data Stewards to Make European Rare Disease Patient Registries FAIR. - Philip van Damme; Pablo Alarcón Moreno; César Henrique Bernabé; Alberto Cámara Ballesteros; Clémence M. A. Le Cornec; Bruna dos Santos Vieira; K. Joeri van der Velde; Shuxin Zhang; Claudio Carta; Ronald Cornet; Peter A. C. 't Hoen; Annika Jacobsen; et al. (Data Sci. J., 2023)