Bruna dos Santos Vieira

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 et al. · Journal of Biomedical Semantics · 2022 · 53 citations · Full text

Computing, Biomedical Informatics, Health Informatics +17

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

Bruna dos Santos Vieira, César H. Bernabé, Shuxin Zhang et al. · Orphanet Journal of Rare Diseases · 2022 · 44 citations · Full text

Computing, Biomedical Informatics, Health Informatics +17

The de novo FAIRification process of a registry for vascular anomalies

Karlijn H.J. Groenen, Annika Jacobsen, Martijn G. Kersloot et al. · Orphanet Journal of Rare Diseases · 2021 · 30 citations · Full text

Computing, Biomedical Informatics, Health Informatics +14

Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research

Haitham Abaza, Dennis Kadioglu, Simona Cristina Martin et al. · JMIR Medical Informatics · 2022 · 27 citations · Full text

Computing, Biomedical Informatics, Health Informatics +17

De-novo FAIRification via an Electronic Data Capture system by automated transformation of filled electronic Case Report Forms into machine-readable data

Martijn G. Kersloot, Annika Jacobsen, Karlijn H.J. Groenen et al. · Journal of Biomedical Informatics · 2021 · 26 citations · Full text

Computing, Biomedical Informatics, Health Informatics +16