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The FAIR journey of a patient-driven registry: Reflections and practical solutions from the Duchenne Data Platform FAIRification experience2025 Journal of Neuromuscular Diseases article Computer Science Research Data Management Practices Open access
Nawel Lalout, Mark D. Wilkinson, Dagmar Wandrei, Adrian Tassoni, António Atalaia, Alberto Cámara Ballesteros, +11 more
1citations -
The de novo FAIRification process of a registry for vascular anomalies2021 Orphanet Journal of Rare Diseases article Computer Science Research Data Management Practices Open access
Karlijn H.J. Groenen, Annika Jacobsen, Martijn G. Kersloot, Bruna dos Santos Vieira, David van Enckevort, Rajaram Kaliyaperumal, +5 more
27citations -
Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries2022 Orphanet Journal of Rare Diseases article Computer Science Research Data Management Practices Open access
Bruna dos Santos Vieira, César H. Bernabé, Shuxin Zhang, Haitham Abaza, Nirupama Benis, Alberto Cámara, +9 more
41citations -
Additional file 1 of Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries2023 University of Groningen research database (University of Groningen / Centre for Information Technology) dataset Computer Science Research Data Management Practices Open access
Bruna dos Santos Vieira, César H. Bernabé, Shuxin Zhang, Haitham Abaza, Nirupama Benis, Alberto Cámara, +9 more
0citations -
Additional file 2 of Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries2023 University of Groningen research database (University of Groningen / Centre for Information Technology) dataset Computer Science Research Data Management Practices Open access
Bruna dos Santos Vieira, César H. Bernabé, Shuxin Zhang, Haitham Abaza, Nirupama Benis, Alberto Cámara, +9 more
0citations -
The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry2021 International Journal of Environmental Research and Public Health article Computer Science Research Data Management Practices Open access
Salma Ali, Jillian Bryce, Yllka Kodra, Domenica Taruscio, Luca Persani, S. Faisal Ahmed
23citations -
Assess and validate predictive performance of models for in-hospital mortality in COVID-19 patients: A retrospective cohort study in the Netherlands comparing the value of registry data with high-granular electronic health records2022 International Journal of Medical Informatics article Computer Science Machine Learning in Healthcare Open access
Iacopo Vagliano, Ameen Abu–Hanna, Dave Anton Dongelmans, Dylan W. de Lange, Diederik A M P J Gommers, Olaf L. Cremer, +40 more
9citations -
The FAIR data point populator: collaborative FAIRification and population of FAIR data points2025 BMC Medical Informatics and Decision Making article Computer Science Research Data Management Practices Open access
Daphne Wijnbergen, Rajaram Kaliyaperumal, Luiz Olavo Bonino da Silva Santos, Barend Mons, Marco Roos, Eleni Mina
3citations -
The FAIR Data Point Populator: collaborative FAIRification and population of FAIR Data Points2024 bioRxiv (Cold Spring Harbor Laboratory) preprint Computer Science Research Data Management Practices Open access
Daphne Wijnbergen, Rajaram Kaliyaperumal, Luiz Olavo Bonino da Silva Santos, Barend Mons, Marco Roos, Eleni Mina
0citations -
The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes2020 International Journal of Environmental Research and Public Health article Computer Science Research Data Management Practices Open access
Salma Ali, Jillian Bryce, Li En Tan, Olaf Hiort, Alberto M. Pereira, Erica L T van den Akker, +10 more
52citations -
Deep-Learning-Based Thrombus Localization and Segmentation in Patients with Posterior Circulation Stroke2022 Diagnostics article Computer Science Medical Image Segmentation Techniques Open access cited by 1 patent
Riaan Zoetmulder, Agnetha A.E. Bruggeman, Ivana Išgum, Efstratios Gavves, Charles B.L.M. Majoie, Ludo F.M. Beenen, +14 more
6citations -
Can we reliably automate clinical prognostic modelling? A retrospective cohort study for ICU triage prediction of in-hospital mortality of COVID-19 patients in the Netherlands2022 International Journal of Medical Informatics article Computer Science Machine Learning in Healthcare Open access
Iacopo Vagliano, Sylvia Brinkman, Ameen Abu–Hanna, M. Sesmu Arbous, Dave Anton Dongelmans, Paul Elbers, +3 more
13citations -
Automatic segmentation of multiple cardiovascular structures from cardiac computed tomography angiography images using deep learning2020 PLoS ONE article Computer Science Medical Image Segmentation Techniques Open access cited by 3 patents
Lohendran Baskaran, Subhi Jamal Alaref, Gabriel Maliakal, Benjamin C. Lee, Zhuoran Xu, Jeong Won Choi, +31 more
48citations -
The Information Technology (IT) Infrastructure of the Multicenter Archipelago of Ovarian Cancer Research Biobank: A Potential Blueprint for Other Biobanks2024 Biopreservation and Biobanking article Computer Science Research Data Management Practices Open access
Hein S. Zelisse, Sander de Ridder, Mignon D J M van Gent, Constantijne Helene Mom, G. Bea A. Wisman, Eva‐Maria Roes, +20 more
2citations -
High interstudy repeatability of automatic deep learnt biventricular CMR measurements2021 European Heart Journal - Cardiovascular Imaging article Computer Science Medical Image Segmentation Techniques
Samer Alabed, Kavita Karunasaagarar, Faisal Alandejani, Pankaj Garg, Johanna Uthoff, Peter Metherall, +6 more
0citations
24 results