An agenda-setting paper on data sharing platforms: euCanSHare workshop

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 challen...

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Autores principales: Devriendt, Thijs, Ammann, Clemens, W. Asselbergs, Folkert, Bernier, Alexander, Costas, Rodrigo, Friedrich, Matthias G., Gelpi, Josep L., Jarvelin, Marjo-Riitta, Kuulasmaa, Kari, Lekadir, Karim, Mayrhofer, Michaela Th., Papez, Vaclav, Pasterkamp, Gerard, Petersen, Steffen E., Schmidt, Carsten Oliver, Schulz-Menger, Jeanette, Söderberg, Stefan, Shabani, Mahsa, Veronesi, Giovanni, Viezzer, Darian Steven, Borry, Pascal
Formato: Online Artículo Texto
Lenguaje:English
Publicado: F1000 Research Limited 2021
Materias:
Research Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10445835/
https://www.ncbi.nlm.nih.gov/pubmed/37645200
http://dx.doi.org/10.12688/openreseurope.13860.2
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author Devriendt, Thijs
Ammann, Clemens
W. Asselbergs, Folkert
Bernier, Alexander
Costas, Rodrigo
Friedrich, Matthias G.
Gelpi, Josep L.
Jarvelin, Marjo-Riitta
Kuulasmaa, Kari
Lekadir, Karim
Mayrhofer, Michaela Th.
Papez, Vaclav
Pasterkamp, Gerard
Petersen, Steffen E.
Schmidt, Carsten Oliver
Schulz-Menger, Jeanette
Söderberg, Stefan
Shabani, Mahsa
Veronesi, Giovanni
Viezzer, Darian Steven
Borry, Pascal
author_facet Devriendt, Thijs
Ammann, Clemens
W. Asselbergs, Folkert
Bernier, Alexander
Costas, Rodrigo
Friedrich, Matthias G.
Gelpi, Josep L.
Jarvelin, Marjo-Riitta
Kuulasmaa, Kari
Lekadir, Karim
Mayrhofer, Michaela Th.
Papez, Vaclav
Pasterkamp, Gerard
Petersen, Steffen E.
Schmidt, Carsten Oliver
Schulz-Menger, Jeanette
Söderberg, Stefan
Shabani, Mahsa
Veronesi, Giovanni
Viezzer, Darian Steven
Borry, Pascal
author_sort Devriendt, Thijs
collection PubMed
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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spelling pubmed-104458352023-08-29 An agenda-setting paper on data sharing platforms: euCanSHare workshop Devriendt, Thijs Ammann, Clemens W. Asselbergs, Folkert Bernier, Alexander Costas, Rodrigo Friedrich, Matthias G. Gelpi, Josep L. Jarvelin, Marjo-Riitta Kuulasmaa, Kari Lekadir, Karim Mayrhofer, Michaela Th. Papez, Vaclav Pasterkamp, Gerard Petersen, Steffen E. Schmidt, Carsten Oliver Schulz-Menger, Jeanette Söderberg, Stefan Shabani, Mahsa Veronesi, Giovanni Viezzer, Darian Steven Borry, Pascal Open Res Eur Research Article 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. F1000 Research Limited 2021-11-23 /pmc/articles/PMC10445835/ /pubmed/37645200 http://dx.doi.org/10.12688/openreseurope.13860.2 Text en Copyright: © 2021 Devriendt T et al. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
Devriendt, Thijs
Ammann, Clemens
W. Asselbergs, Folkert
Bernier, Alexander
Costas, Rodrigo
Friedrich, Matthias G.
Gelpi, Josep L.
Jarvelin, Marjo-Riitta
Kuulasmaa, Kari
Lekadir, Karim
Mayrhofer, Michaela Th.
Papez, Vaclav
Pasterkamp, Gerard
Petersen, Steffen E.
Schmidt, Carsten Oliver
Schulz-Menger, Jeanette
Söderberg, Stefan
Shabani, Mahsa
Veronesi, Giovanni
Viezzer, Darian Steven
Borry, Pascal
An agenda-setting paper on data sharing platforms: euCanSHare workshop
title An agenda-setting paper on data sharing platforms: euCanSHare workshop
title_full An agenda-setting paper on data sharing platforms: euCanSHare workshop
title_fullStr An agenda-setting paper on data sharing platforms: euCanSHare workshop
title_full_unstemmed An agenda-setting paper on data sharing platforms: euCanSHare workshop
title_short An agenda-setting paper on data sharing platforms: euCanSHare workshop
title_sort agenda-setting paper on data sharing platforms: eucanshare workshop
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10445835/
https://www.ncbi.nlm.nih.gov/pubmed/37645200
http://dx.doi.org/10.12688/openreseurope.13860.2
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