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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.
Afiliação
  • Devriendt T; Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
  • Ammann C; 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.
  • W Asselbergs F; Department of Cardiology, Division Heart & Lungs, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
  • Bernier A; Institute of Cardiovascular Science, Faculty of Population Health Sciences, University College London, London, UK.
  • Costas R; Institute of Health Informatics, University College London, London, UK.
  • Friedrich MG; Health Data Research UK, London, UK.
  • Gelpi JL; Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Canada.
  • Jarvelin MR; Centre for Science and Technology Studies (CWTS), Leiden University, Leiden, The Netherlands.
  • Kuulasmaa K; Departments of Medicine and Diagnostic Radiology, McGill University Health Centre, Montreal, Canada.
  • Lekadir K; Department of Biochemistry and Molecular Biomedicine, University of Barcelona, Barcelona, Spain.
  • Mayrhofer MT; Barcelona Supercomputing Center (BSC), Barcelona, Spain.
  • Papez V; Department of Life Sciences, College of Health and Life Sciences, Brunel University London, London, UK.
  • Pasterkamp G; MRC-PHE Centre for Environment and Health, Department of Epidemiology and Biostatistics, School of Public Health, Imperial College London, London, UK.
  • Petersen SE; Center for Life Course Health Research, Faculty of Medicine, University of Oulu, Oulu, Finland.
  • Schmidt CO; Unit of Primary Health Care, Oulu University Hospital, Oulu, Finland.
  • Schulz-Menger J; National Institute for Health and Welfare, Helsinki, Finland.
  • Söderberg S; Artificial Intelligence in Medicine Lab (BCN-AIM), Department of Mathematics and Computer Science, University of Barcelona, Barcelona, Spain.
  • Shabani M; BBMRI, Graz, Austria.
  • Veronesi G; Institute of Health Informatics, University College London, London, UK.
  • Viezzer DS; Health Data Research UK, London, UK.
  • Borry P; Department of Clinical Diagnostics Laboratories, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
Open Res Eur ; 1: 80, 2021.
Article em En | MEDLINE | ID: mdl-37645200
ABSTRACT
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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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Idioma: En Revista: Open Res Eur Ano de publicação: 2021 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Idioma: En Revista: Open Res Eur Ano de publicação: 2021 Tipo de documento: Article