Published July 19, 2021
| Version 1
Journal article
Open
An agenda-setting paper on data sharing platforms: euCanSHare workshop
Creators
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Devriendt, Thijs1
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Ammann, Clemens2
- Asselberghs, Folkert W.3
- Bernier, Alexander4
- Costas, Rodrigo5
- Friedrich, Matthias G.6
- Gelpi, Josep L.7
- Jarvelin, Marjo-Riitta8
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Kuulasmaa, Kari9
- Lekadir, Karim10
- Mayrhofer, Michaela Th.11
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Papez, Vaclav3
- Pasterkamp, Gerard12
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Petersen, Steffen E.13
- Schmidt, Carsten Oliver14
- Schulz-Menger, Jeanette15
- Söderberg, Stefan16
- Shabani, Mahsa17
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Veronesi, Giovanni18
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Viezzer, Darian Steven19
- Borry, Pascal1
- 1. Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
- 2. Working 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
- 3. Health Data Research UK, London, UK
- 4. Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Canada
- 5. Centre for Science and Technology Studies (CWTS), Leiden University, Leiden, The Netherlands
- 6. Departments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, Canada
- 7. Barcelona Supercomputing Center (BSC), Barcelona, Spain
- 8. Department of Life Sciences, College of Health and Life Sciences, Brunel University London, London, UK
- 9. National Institute for Health and Welfare, Helsinki, Finland
- 10. Artificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, Spain
- 11. BBMRI, Graz, Austria
- 12. Department of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
- 13. The Alan Turing Institute, London, UK
- 14. Institute for Community Medicine, Department SHIP-KEF, Greifswald University Medical Center, Greifswald, Germany
- 15. Department of Cardiology and Nephrology, HELIOS Hospital Berlin-Buch, Berlin, Germany
- 16. Department of Public Health and Clinical Medicine, Heart Centre, Umeå University, Umeå, Sweden
- 17. METAMEDICA, Department of Law and Criminology, Ghent University, Ghent, Belgium
- 18. Research Center in Epidemiology and Preventive Medicine (EPIMED), Department of Medicine and Surgery, University of Insubria in Varese, Varese, Italy
- 19. DZHK (German Centre for Cardiovascular Research) partner site, Berlin, Germany
Description
Various 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.
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References
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