The Dementias Platform UK (DPUK) Data Portal

doi:10.1007/s10654-020-00633-4

. 2020 Jun;35(6):601-611.

doi: 10.1007/s10654-020-00633-4. Epub 2020 Apr 23.

The Dementias Platform UK (DPUK) Data Portal

Sarah Bauermeister¹, Christopher Orton², Simon Thompson², Roger A Barker³, Joshua R Bauermeister¹, Yoav Ben-Shlomo⁴, Carol Brayne⁵, David Burn⁶, Archie Campbell⁷, Catherine Calvin¹, Siddharthan Chandran⁸, Nishi Chaturvedi⁹, Geneviève Chêne¹⁰, Iain P Chessell¹¹, Anne Corbett¹², Daniel H J Davis⁹, Mike Denis¹³, Carole Dufouil¹⁰, Paul Elliott^{14

15

16}, Nick Fox¹⁷, Derek Hill¹⁸, Scott M Hofer¹⁹, Michele T Hu²⁰, Christoph Jindra¹, Frank Kee²¹, Chi-Hun Kim¹, Changsoo Kim²², Mika Kivimaki²³, Ivan Koychev¹, Rachael A Lawson²⁴, Gerry J Linden²¹, Ronan A Lyons², Clare Mackay¹, Paul M Matthews²⁵, Bernadette McGuiness²¹, Lefkos Middleton¹⁴, Catherine Moody²⁶, Katrina Moore¹⁷, Duk L Na²⁷, John T O'Brien²⁸, Sebastien Ourselin²⁹, Shantini Paranjothy³⁰, Ki-Soo Park³¹, David J Porteous³², Marcus Richards⁹, Craig W Ritchie⁸, Jonathan D Rohrer¹⁷, Martin N Rossor¹⁷, James B Rowe³, Rachael Scahill¹⁷, Christian Schnier³³, Jonathan M Schott¹⁷, Sang W Seo²⁷, Matthew South¹, Matthew Steptoe³⁴, Sarah J Tabrizi¹⁷, Andrea Tales³⁵, Therese Tillin³⁶, Nicholas J Timpson⁴, Arthur W Toga³⁷, Pieter-Jelle Visser³⁸, Richard Wade-Martins³⁹, Tim Wilkinson³³, Julie Williams⁴⁰, Andrew Wong⁹, John E J Gallacher⁴¹

Affiliations

¹ Department of Psychiatry, University of Oxford, Oxford, UK.
² Swansea University Medical School, Swansea University, Swansea, UK.
³ Cambridge University Department of Clinical Neurosciences and Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
⁴ Population Health Sciences, University of Bristol, Bristol, UK.
⁵ Department of Public Health, University of Cambridge, Cambridge, UK.
⁶ Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, UK.
⁷ Department of Medical Genetics, University of Edinburgh, Edinburgh, UK.
⁸ Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.
⁹ MRC Unit for Lifelong Health and Ageing, UCL, London, UK.
¹⁰ Bordeaux Population Health, Université Bordeaux, Bordeaux, France.
¹¹ Neuroscience BioPharma R&D, AstraZeneca, Cambridge, UK.
¹² College of Medicine and Health, University of Exeter, Exeter, UK.
¹³ Oxford Academic Health Science Network, University of Oxford, Oxford, UK.
¹⁴ MRC Centre for Environment and Health, School of Public Health, Imperial College London, London, UK.
¹⁵ Imperial College NIHR Biomedical Research Centre, Imperial College London, London, UK.
¹⁶ Health Data Research UK London at Imperial College London, London, UK.
¹⁷ Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.
¹⁸ King's College London, London, UK.
¹⁹ Department of Psychology, University of Victoria, Victoria, Canada.
²⁰ Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK.
²¹ Centre for Public Health, Queen's University Belfast, Belfast, UK.
²² Department of Preventive Medicine, Yonsei University College of Medicine, Seoul, South Korea.
²³ Institute of Epidemiology and Health, University College London, London, UK.
²⁴ Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK.
²⁵ Division of Brain Sciences and UK Dementia Research Institute, Imperial College London, London, UK.
²⁶ Medical Research Council, Swindon, UK.
²⁷ Department of Neurology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, South Korea.
²⁸ Department of Psychiatry, University of Cambridge, Cambridge, UK.
²⁹ School of Biomedical Engineering & Imaging Sciences, King's College London, London, UK.
³⁰ School of Medicine, Cardiff University, Cardiff, UK.
³¹ Institute of Health Science, Gyeongsang National University, Jinju-si, South Korea.
³² Institute of Genetics and Molecular Medicine, University of Edinburgh, Edinburgh, UK.
³³ Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.
³⁴ Department of Behavioural Science and Health, UCL, London, UK.
³⁵ Centre for Innovative Ageing, Swansea University, Swansea, UK.
³⁶ UCL Institute for Cardiovascular Science, London, UK.
³⁷ Laboratory of Neuro Imaging, USC, Los Angeles, USA.
³⁸ VU University Medical Centre, Maastricht University, Maastricht, The Netherlands.
³⁹ Department of Physiology, Anatomy and Genetics, University of Oxford, Oxford, UK.
⁴⁰ Institute of Psychological Medicine and Clinical Neurosciences, and UK Dementia Research Institute, Cardiff University, Cardiff, UK.
⁴¹ Department of Psychiatry, University of Oxford, Oxford, UK. john.gallacher@psych.ox.ac.uk.

PMID: 32328990
PMCID: PMC7320955
DOI: 10.1007/s10654-020-00633-4

Free PMC article

The Dementias Platform UK (DPUK) Data Portal

Sarah Bauermeister et al. Eur J Epidemiol. 2020 Jun.

Free PMC article

. 2020 Jun;35(6):601-611.

doi: 10.1007/s10654-020-00633-4. Epub 2020 Apr 23.

Authors

Affiliations

¹ Department of Psychiatry, University of Oxford, Oxford, UK.
² Swansea University Medical School, Swansea University, Swansea, UK.
³ Cambridge University Department of Clinical Neurosciences and Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
⁴ Population Health Sciences, University of Bristol, Bristol, UK.
⁵ Department of Public Health, University of Cambridge, Cambridge, UK.
⁶ Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, UK.
⁷ Department of Medical Genetics, University of Edinburgh, Edinburgh, UK.
⁸ Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.
⁹ MRC Unit for Lifelong Health and Ageing, UCL, London, UK.
¹⁰ Bordeaux Population Health, Université Bordeaux, Bordeaux, France.
¹¹ Neuroscience BioPharma R&D, AstraZeneca, Cambridge, UK.
¹² College of Medicine and Health, University of Exeter, Exeter, UK.
¹³ Oxford Academic Health Science Network, University of Oxford, Oxford, UK.
¹⁴ MRC Centre for Environment and Health, School of Public Health, Imperial College London, London, UK.
¹⁵ Imperial College NIHR Biomedical Research Centre, Imperial College London, London, UK.
¹⁶ Health Data Research UK London at Imperial College London, London, UK.
¹⁷ Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.
¹⁸ King's College London, London, UK.
¹⁹ Department of Psychology, University of Victoria, Victoria, Canada.
²⁰ Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK.
²¹ Centre for Public Health, Queen's University Belfast, Belfast, UK.
²² Department of Preventive Medicine, Yonsei University College of Medicine, Seoul, South Korea.
²³ Institute of Epidemiology and Health, University College London, London, UK.
²⁴ Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK.
²⁵ Division of Brain Sciences and UK Dementia Research Institute, Imperial College London, London, UK.
²⁶ Medical Research Council, Swindon, UK.
²⁷ Department of Neurology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, South Korea.
²⁸ Department of Psychiatry, University of Cambridge, Cambridge, UK.
²⁹ School of Biomedical Engineering & Imaging Sciences, King's College London, London, UK.
³⁰ School of Medicine, Cardiff University, Cardiff, UK.
³¹ Institute of Health Science, Gyeongsang National University, Jinju-si, South Korea.
³² Institute of Genetics and Molecular Medicine, University of Edinburgh, Edinburgh, UK.
³³ Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.
³⁴ Department of Behavioural Science and Health, UCL, London, UK.
³⁵ Centre for Innovative Ageing, Swansea University, Swansea, UK.
³⁶ UCL Institute for Cardiovascular Science, London, UK.
³⁷ Laboratory of Neuro Imaging, USC, Los Angeles, USA.
³⁸ VU University Medical Centre, Maastricht University, Maastricht, The Netherlands.
³⁹ Department of Physiology, Anatomy and Genetics, University of Oxford, Oxford, UK.
⁴⁰ Institute of Psychological Medicine and Clinical Neurosciences, and UK Dementia Research Institute, Cardiff University, Cardiff, UK.
⁴¹ Department of Psychiatry, University of Oxford, Oxford, UK. john.gallacher@psych.ox.ac.uk.

PMID: 32328990
PMCID: PMC7320955
DOI: 10.1007/s10654-020-00633-4

Abstract

The Dementias Platform UK Data Portal is a data repository facilitating access to data for 3 370 929 individuals in 42 cohorts. The Data Portal is an end-to-end data management solution providing a secure, fully auditable, remote access environment for the analysis of cohort data. All projects utilising the data are by default collaborations with the cohort research teams generating the data. The Data Portal uses UK Secure eResearch Platform infrastructure to provide three core utilities: data discovery, access, and analysis. These are delivered using a 7 layered architecture comprising: data ingestion, data curation, platform interoperability, data discovery, access brokerage, data analysis and knowledge preservation. Automated, streamlined, and standardised procedures reduce the administrative burden for all stakeholders, particularly for requests involving multiple independent datasets, where a single request may be forwarded to multiple data controllers. Researchers are provided with their own secure 'lab' using VMware which is accessed using two factor authentication. Over the last 2 years, 160 project proposals involving 579 individual cohort data access requests were received. These were received from 268 applicants spanning 72 institutions (56 academic, 13 commercial, 3 government) in 16 countries with 84 requests involving multiple cohorts. Projects are varied including multi-modal, machine learning, and Mendelian randomisation analyses. Data access is usually free at point of use although a small number of cohorts require a data access fee.

Keywords: Cohorts; Data access; Data management; Data platform; Data repository; Epidemiology.

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Conflict of interest statement

The authors declare that they have no conflict of interest.

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References

1. Dementias Platform UK. https://portal.dementiasplatform.uk/. Accessed 09 June 2019.
1. Wilkinson MD, Dumontier M, Aalbersberg IJ, et al. The FAIR guiding principles for scientific data management and stewardship. Sci Data. 2016;3:160018. doi: 10.1038/sdata.2016.18. - DOI - PMC - PubMed
1. Farr Institute. http://farrinstitute.org/public-engagement-involvement/100-ways-of-using.... Accessed 09 June 2019.
1. Data Protection Act. https://www.gov.uk/data-protection. Accessed 09 June 2019.
1. European Union General Data Protection Regulation (GDPR). https://eugdpr.org/. Accessed 09 June 2019.

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[1] Dementias Platform UK. https://portal.dementiasplatform.uk/. Accessed 09 June 2019.

[2] Dementias Platform UK. https://portal.dementiasplatform.uk/. Accessed 09 June 2019.

[3] Wilkinson MD, Dumontier M, Aalbersberg IJ, et al. The FAIR guiding principles for scientific data management and stewardship. Sci Data. 2016;3:160018. doi: 10.1038/sdata.2016.18. - DOI - PMC - PubMed

[4] Wilkinson MD, Dumontier M, Aalbersberg IJ, et al. The FAIR guiding principles for scientific data management and stewardship. Sci Data. 2016;3:160018. doi: 10.1038/sdata.2016.18. - DOI - PMC - PubMed

[5] Farr Institute. http://farrinstitute.org/public-engagement-involvement/100-ways-of-using.... Accessed 09 June 2019.

[6] Farr Institute. http://farrinstitute.org/public-engagement-involvement/100-ways-of-using.... Accessed 09 June 2019.

[7] Data Protection Act. https://www.gov.uk/data-protection. Accessed 09 June 2019.

[8] Data Protection Act. https://www.gov.uk/data-protection. Accessed 09 June 2019.

[9] European Union General Data Protection Regulation (GDPR). https://eugdpr.org/. Accessed 09 June 2019.

[10] European Union General Data Protection Regulation (GDPR). https://eugdpr.org/. Accessed 09 June 2019.

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The Dementias Platform UK (DPUK) Data Portal

Affiliations

The Dementias Platform UK (DPUK) Data Portal

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