Sharing brain imaging data in the Open Science era: how and why?

Kathrin Giehl¹, Henk-Jan Mutsaerts², Kristien Aarts³, Frederik Barkhof⁴, Svenja Caspers⁵, Gaël Chetelat⁶, Marie-Elisabeth Colin⁷, Emrah Düzel⁸, Giovanni B Frisoni⁹, M Arfan Ikram¹⁰, Jorge Jovicich¹¹, Silvia Morbelli¹², Wolfgang Oertel¹³, Christian Paret¹⁴, Daniela Perani¹⁵, Petra Ritter¹⁶, Bàrbara Segura¹⁷, Laura E M Wisse¹⁸, Elke De Witte¹⁹, Stefano F Cappa²⁰, Thilo van Eimeren²¹

Affiliations

¹ Department of Nuclear Medicine, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany; Institute of Neurosciences and Medicine (INM-2), Research Center Jülich, Jülich, Germany.
² Radiology and Nuclear Medicine, Vrije Universiteit Medical Center, Amsterdam University Medical Center, Amsterdam, Netherlands; Amsterdam Neuroscience, Brain Imaging, Amsterdam, Netherlands.
³ European Brain Council, Brussels, Belgium.
⁴ Radiology and Nuclear Medicine, Vrije Universiteit Medical Center, Amsterdam University Medical Center, Amsterdam, Netherlands; Amsterdam Neuroscience, Brain Imaging, Amsterdam, Netherlands; Queen Square Institute of Neurology and Centre for Medical Image Computing, University College London, London, UK.
⁵ Institute of Neuroscience and Medicine (INM-1), Research Center Jülich, Jülich, Germany; Institute for Anatomy I, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
⁶ Normandie université, UNICAEN, INSERM, U1237, NeuroPresage Team, Cyceron, Caen, France.
⁷ EBRAINS, Brussels, Belgium.
⁸ Faculty of Medicine, Institute for Cognitive Neurology and Dementia Research, University of Magdeburg, Magdeburg, Germany; Center for Neurodegenerative Diseases, Magdeburg, Germany.
⁹ Department of Rehabilitation and Geriatrics, Memory Center, Geneva University and University Hospitals, Geneva, Switzerland.
¹⁰ Department of Epidemiology, Erasmus University Medical Center, Rotterdam, Netherlands.
¹¹ Center for Mind/Brain Sciences, University of Trento, Rovereto, Italy.
¹² Nuclear Medicine Unit, AOU Città Della Salute e Della Scienza di Torino, Turin, Italy; Department of Medical Sciences, University of Turin, Turin, Italy.
¹³ European Brain Council, Brussels, Belgium; Department of Neurology, University of Marburg, Marburg, Germany.
¹⁴ Department of Psychosomatic Medicine and Psychotherapy, Central Institute of Mental Health Mannheim, Medical Faculty Mannheim/Heidelberg University, Mannheim, Germany.
¹⁵ San Raffaele University and San Raffaele Scientific Institute, Milan, Italy.
¹⁶ Berlin Institute of Health, Charité, Universitätsmedizin Berlin, Berlin, Germany; Department of Neurology with Experimental Neurology, Charité, Universitätsmedizin Berlin, Berlin, Germany; Bernstein Focus State Dependencies of Learning and Bernstein Center for Computational Neuroscience, Berlin, Germany; Einstein Center for Neuroscience Berlin, Berlin, Germany; Einstein Center Digital Future, Berlin, Germany.
¹⁷ Medical Psychology Unit, Department of Medicine, Institute of Neurosciences, University of Barcelona, Barcelona, Spain; Hospital Clinic Foundation for Biomedical Research-August Pi i Sunyer Biomedical Research Institute, Barcelona, Spain; Biomedical Research Networking Center on Neurodegenerative Diseases Barcelona, Spain.
¹⁸ Department of Clinical Sciences Lund, Lund University, Lund, Sweden.
¹⁹ Neurosurgical Department, Erasmus University Medical Center, Rotterdam, Netherlands.
²⁰ University Institute of Advanced Studies, Pavia, Italy; IRCCS Mondino Foundation, Pavia, Italy.
²¹ Department of Nuclear Medicine, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany; Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany. Electronic address: thilo.van-eimeren@uk-koeln.de.

PMID: 38906618
DOI: 10.1016/S2589-7500(24)00069-4

Free article

Review

Sharing brain imaging data in the Open Science era: how and why?

Kathrin Giehl et al. Lancet Digit Health. 2024 Jul.

Free article

. 2024 Jul;6(7):e526-e535.

doi: 10.1016/S2589-7500(24)00069-4.

Authors

Affiliations

¹ Department of Nuclear Medicine, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany; Institute of Neurosciences and Medicine (INM-2), Research Center Jülich, Jülich, Germany.
² Radiology and Nuclear Medicine, Vrije Universiteit Medical Center, Amsterdam University Medical Center, Amsterdam, Netherlands; Amsterdam Neuroscience, Brain Imaging, Amsterdam, Netherlands.
³ European Brain Council, Brussels, Belgium.
⁴ Radiology and Nuclear Medicine, Vrije Universiteit Medical Center, Amsterdam University Medical Center, Amsterdam, Netherlands; Amsterdam Neuroscience, Brain Imaging, Amsterdam, Netherlands; Queen Square Institute of Neurology and Centre for Medical Image Computing, University College London, London, UK.
⁵ Institute of Neuroscience and Medicine (INM-1), Research Center Jülich, Jülich, Germany; Institute for Anatomy I, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
⁶ Normandie université, UNICAEN, INSERM, U1237, NeuroPresage Team, Cyceron, Caen, France.
⁷ EBRAINS, Brussels, Belgium.
⁸ Faculty of Medicine, Institute for Cognitive Neurology and Dementia Research, University of Magdeburg, Magdeburg, Germany; Center for Neurodegenerative Diseases, Magdeburg, Germany.
⁹ Department of Rehabilitation and Geriatrics, Memory Center, Geneva University and University Hospitals, Geneva, Switzerland.
¹⁰ Department of Epidemiology, Erasmus University Medical Center, Rotterdam, Netherlands.
¹¹ Center for Mind/Brain Sciences, University of Trento, Rovereto, Italy.
¹² Nuclear Medicine Unit, AOU Città Della Salute e Della Scienza di Torino, Turin, Italy; Department of Medical Sciences, University of Turin, Turin, Italy.
¹³ European Brain Council, Brussels, Belgium; Department of Neurology, University of Marburg, Marburg, Germany.
¹⁴ Department of Psychosomatic Medicine and Psychotherapy, Central Institute of Mental Health Mannheim, Medical Faculty Mannheim/Heidelberg University, Mannheim, Germany.
¹⁵ San Raffaele University and San Raffaele Scientific Institute, Milan, Italy.
¹⁶ Berlin Institute of Health, Charité, Universitätsmedizin Berlin, Berlin, Germany; Department of Neurology with Experimental Neurology, Charité, Universitätsmedizin Berlin, Berlin, Germany; Bernstein Focus State Dependencies of Learning and Bernstein Center for Computational Neuroscience, Berlin, Germany; Einstein Center for Neuroscience Berlin, Berlin, Germany; Einstein Center Digital Future, Berlin, Germany.
¹⁷ Medical Psychology Unit, Department of Medicine, Institute of Neurosciences, University of Barcelona, Barcelona, Spain; Hospital Clinic Foundation for Biomedical Research-August Pi i Sunyer Biomedical Research Institute, Barcelona, Spain; Biomedical Research Networking Center on Neurodegenerative Diseases Barcelona, Spain.
¹⁸ Department of Clinical Sciences Lund, Lund University, Lund, Sweden.
¹⁹ Neurosurgical Department, Erasmus University Medical Center, Rotterdam, Netherlands.
²⁰ University Institute of Advanced Studies, Pavia, Italy; IRCCS Mondino Foundation, Pavia, Italy.
²¹ Department of Nuclear Medicine, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany; Department of Neurology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany. Electronic address: thilo.van-eimeren@uk-koeln.de.

PMID: 38906618
DOI: 10.1016/S2589-7500(24)00069-4

Abstract

The sharing of human neuroimaging data has great potential to accelerate the development of imaging biomarkers in neurological and psychiatric disorders; however, major obstacles remain in terms of how and why to share data in the Open Science context. In this Health Policy by the European Cluster for Imaging Biomarkers, we outline the current main opportunities and challenges based on the results of an online survey disseminated among senior scientists in the field. Although the scientific community fully recognises the importance of data sharing, technical, legal, and motivational aspects often prevent active adoption. Therefore, we provide practical advice on how to overcome the technical barriers. We also call for a harmonised application of the General Data Protection Regulation across EU countries. Finally, we suggest the development of a system that makes data count by recognising the generation and sharing of data as a highly valuable contribution to the community.

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Conflict of interest statement

Declaration of interests H-JM is supported by the Dutch Heart Foundation (03-004-2020-T049), by the Eurostars-2 joint programme with cofunding from the EU Horizon 2020 Research and Innovation Programme (ASPIRE E!113701), provided by the Netherlands Enterprise Agency, and by the EU Joint Program for Neurodegenerative Disease Research, provided by the Netherlands Organisation for Health Research and Development and Alzheimer Nederland (DEBBIE JPND2020-568-106). FB is supported by the National Institute for Health and Care Research biomedical research centre at University College London Hospitals. He is part of the steering committee or Data Safety Monitoring Board member for Biogen, Merck, Alzheimer's Therapeutic Research Institute and Alzheimer's Clinical Trials Consortium, and Prothena. He is a consultant for Roche, Celltrion, Rewind Therapeutics, Merck, IXICO, Jansen, and Combinostics, has research agreements with Merck, Biogen, GE Healthcare, and Roche, and is a cofounder and shareholder of Queen Square Analytics. SC is supported by the EU Horizon 2020 Research and Innovation Programme under grant agreement number 945539 (HBP SGA3). GC has received research support from the EU Horizon 2020 Research and Innovation Programme under grant agreement number 667696, support from Fondation d'entreprise MMA des Entrepreneurs du Futur, Fondation Alzheimer, Programme Hospitalier de Recherche Clinique, Agence Nationale de la Recherche, Région Normandie, Association France Alzheimer et maladies apparentées, Fondation Vaincre Alzheimer, Fondation Recherche Alzheimer, and Fondation pour la Recherche Médicale (all to Institut National de la Santé et de la Recherche Médicale), and personal fees from Institut National de la Santé et de la Recherche Médicale (salary), Eisai, and Fondation Alzheimer. SM received speaker honoraria from GE Healthcare, Eli Lilly, and Life Molecular Imaging. PR acknowledges support by Virtual Research Environment at Charité Berlin – a node of EBRAINS Health Data Cloud, the EU Horizon Europe programme Horizon EBRAINS2.0 (101147319), Virtual Brain Twin (101137289), EBRAINS-PREP 101079717, AISN – 101057655, EBRAIN-Health101058516, Digital Europe TEF-Health 101100700, EU H2020 Virtual Brain Cloud 826421, Human Brain Project SGA2 785907; Human Brain Project SGA3 945539, ERC Consolidator 683049; German Research Foundation SFB 1436 (project ID 425899996); SFB 1315 (project ID 327654276); SFB 936 (project ID 178316478); SFB-TRR 295 (project ID 424778381); SPP Computational Connectomics RI 2073/6-1, RI 2073/10-2, RI 2073/9-1; DFG Clinical Research Group BECAUSE-Y 504745852, PHRASE Horizon EIC grant 101058240; Berlin Institute of Health & Foundation Charité, Johanna Quandt Excellence Initiative; and ERAPerMed Pattern-Cog2522FSB904. BS is supported by the María de Maeztu Unit of Excellence (Institute of Neurosciences, University of Barcelona) CEX2021-001159-M Ministry of Science, Innovation and Universities and by Generalitat de Catalunya 2021SGR0080 and the CERCA Programme/Generalitat de Catalunya. LEMW is supported by MultiPark, a strategic research area at Lund University, an National Institutes of Health grant (R01-AG070952), an Alzheimerfonden project grant (AF-980872), and a Vetenskapsradet project grant (2022-00900). TvE is a civil servant of North Rhine-Westphalia and employee of the University Hospital of Cologne, Germany. In the last 2 years, he has received honoraria, stipends, or speaker fees from the Lundbeck Foundation, Gain Therapeutics, Orion Pharma, Lundbeck Pharma, Atheneum, and the International Movement Disorders Society. He receives materials from Life Molecular Imaging and Lilly Pharma. He owns stocks of the corporations NVIDIA, Microsoft, and IBM. Multiple unrelated research projects are currently supported by the German Research Foundation. All other authors declare no competing interests.

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Sharing brain imaging data in the Open Science era: how and why?

Affiliations

Sharing brain imaging data in the Open Science era: how and why?

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Miscellaneous