| Semantic modelling of common data elements for rare disease registries, and a prototype workflow for their deployment over registry data R Kaliyaperumal, MD Wilkinson, PA Moreno, N Benis, R Cornet, ... Journal of biomedical semantics 13 (1), 9, 2022 | 25 | 2022 |
| De-novo FAIRification via an Electronic Data Capture system by automated transformation of filled electronic Case Report Forms into machine-readable data MG Kersloot, A Jacobsen, KHJ Groenen, B dos Santos Vieira, ... Journal of Biomedical Informatics 122, 103897, 2021 | 18 | 2021 |
| The de novo FAIRification process of a registry for vascular anomalies KHJ Groenen, A Jacobsen, MG Kersloot, B dos Santos Vieira, ... Orphanet journal of rare diseases 16, 1-10, 2021 | 16 | 2021 |
| Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries B dos Santos Vieira, CH Bernabé, S Zhang, H Abaza, N Benis, A Cámara, ... Orphanet journal of rare diseases 17 (1), 436, 2022 | 15 | 2022 |
| Applying the FAIR data principles to the registry of vascular anomalies (VASCA) BDS Vieira, K Groenen, P Hoen, A Jacobsen, M Roos, R Kaliyaperumal, ... Stud. Health Technol. Inform 271, 115-116, 2020 | 8 | 2020 |
| Domain-specific common data elements for rare disease registration: conceptual approach of a European joint initiative toward semantic interoperability in rare disease research H Abaza, D Kadioglu, S Martin, A Papadopoulou, B dos Santos Vieira, ... JMIR Medical Informatics 10 (5), e32158, 2022 | 7 | 2022 |
| The international society for the study of vascular anomalies (ISSVA) ontology P van Damme, MG Kersloot, B dos Santos Vieira, LS Kool, R Cornet Journal of Web Semantics 74, 100731, 2022 | 4 | 2022 |
| Building expertise on FAIR through evolving Bring Your Own Data (BYOD) workshops: describing the data, software, and management-focused approaches and their evolution CH Bernabé, L Thielemans, R Kaliyaperumal, C Carta, S Zhang, ... Data Intelligence, 1-23, 2023 | 3 | 2023 |
| A resource for guiding data stewards to make European rare disease patient registries FAIR P Van Damme, PA Moreno, CH Bernabé, AC Ballesteros, CMA Le Cornec, ... Data Science Journal 22, 12, 2023 | 3 | 2023 |
| Surveyed common data access policies preferences amongst European Reference Networks A Cámara, N Benis, CH Bernabé, ID Coelho, C Le Cornec, A Demir, ... Centro de Biotecnología y Genómica de Plantas (CBGP), 2023 | | 2023 |
| The International Society for the Study of Vascular Anomalies (ISSVA) ontology P Damme, M Kersloot, B Dos Santos Vieira, LJ Schultze Kool, R Cornet | | 2022 |
| Hospital-Based Cancer Registries-Data Quality Evaluation and Systematic Review of Literature B dos Santos Vieira | | 2018 |
| Improving the FAIRness of vascular anomaly research data using the International Society for the Study of Vascular Anomalies (ISSVA) Ontology P van Damme, MG Kersloot, B dos Santos Vieira, LS Kool, R Corneta | | |
