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An agenda-setting paper on data sharing platforms : euCanSHare workshop |
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| Author: | Devriendt, Thijs1; Ammann, Clemens2; Asselberghs, Folkert W.3,4,5,6; |
| Organizations: |
1Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium 2Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center, a joint cooperation between the Charité - Universitätsmedizin Berlin and the Max-Delbrück-Center for Molecular Medicine, Berlin, Germany 3Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
4Institute of Cardiovascular Science, Faculty of Population Health Sciences, University College London, London, UK
5Institute of Health Informatics, University College London, London, UK 6Health Data Research UK, London, UK 7Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Canada 8Centre for Science and Technology Studies (CWTS), Leiden University, Leiden, The Netherlands 9Departments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, Canada 10Department of Biochemistry and Molecular Biomedicine, University of Barcelona, Barcelona, Spain 11Barcelona Supercomputing Center (BSC), Barcelona, Spain 12MRC-PHE Centre for Environment and Health, Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, London, UK 13Center for Life Course Health Research, Faculty of Medicine, University of Oulu, Oulu, Finland 14Unit of Primary Health Care, Oulu University Hospital, Oulu, Finland 15Department of Life Sciences, College of Health and Life Sciences, Brunel University London, London, UK 16National Institute for Health and Welfare, Helsinki, Finland 17Artificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, Spain 18BBMRI, Graz, Austria 19Department of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands 20Barts Heart Centre, Barts Health NHS Trust, London, UK 21William Harvey Research Institute, NIHR Barts Biomedical Research Centre, Queen Mary University of London, London, UK 22The Alan Turing Institute, London, UK 23Institute for Community Medicine, Department SHIP-KEF, Greifswald University Medical Center, Greifswald, Germany 24DZHK (German Centre for Cardiovascular Research) partner site, Berlin, Germany 25Department of Cardiology and Nephrology, HELIOS Hospital Berlin-Buch, Berlin, Germany 26Department of Public Health and Clinical Medicine, Heart Centre, Umeå University, Umeå, Sweden 27METAMEDICA, Department of Law and Criminology, Ghent University, Ghent, Belgium 28Research Center in Epidemiology and Preventive Medicine (EPIMED), Department of Medicine and Surgery, University of Insubria in Varese, Varese, Italy |
| Format: | article |
| Version: | published version |
| Access: | open |
| Online Access: | PDF Full Text (PDF, 1.3 MB) |
| Persistent link: | http://urn.fi/urn:nbn:fi-fe2021111254969 |
| Language: | English |
| Published: |
F1000 Research,
2021
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| Publish Date: | 2021-11-12 |
| Description: |
AbstractVarious data sharing platforms are being developed to enhance the sharing of cohort data by addressing the fragmented state of data storage and access systems. However, policy challenges in several domains remain unresolved. The euCanSHare workshop was organized to identify and discuss these challenges and to set the future research agenda. Concerns over the multiplicity and long-term sustainability of platforms, lack of resources, access of commercial parties to medical data, credit and recognition mechanisms in academia and the organization of data access committees are outlined. Within these areas, solutions need to be devised to ensure an optimal functioning of platforms. see all
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| Series: |
Open research Europe |
| ISSN: | 2732-5121 |
| ISSN-E: | 2732-5121 |
| ISSN-L: | 2732-5121 |
| Volume: | 1 |
| Article number: | 80 |
| DOI: | 10.12688/openreseurope.13860.1 |
| OADOI: | https://oadoi.org/10.12688/openreseurope.13860.1 |
| Type of Publication: |
A1 Journal article – refereed |
| Field of Science: |
113 Computer and information sciences 3142 Public health care science, environmental and occupational health |
| Subjects: | |
| Funding: |
This research was financially supported by the European Union’s Horizon 2020 research and innovation programme under the grant agreement Nos 116074 (project BigData Heart), 825903 (project euCanSHare), 825775 (project CINECA) and 824989 (project EUCAN-Connect). |
| EU Grant Number: |
(824989) EUCAN-Connect - A federated FAIR platform enabling large-scale analysis of high-value cohort data connecting Europe and Canada in personalized health |
| Copyright information: |
© 2021 Devriendt T et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
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https://creativecommons.org/licenses/by/4.0/ |