The Dementias Platform UK (DPUK) data portal

Bauermeister, Sarah, Orton, Christopher, Thompson, Simon, Barker, Roger A., Bauermeister, Joshua R., Ben-Shlomo, Yoav, Brayne, Carol, Burn, David, Campbell, Archie, Calvin, Catherine, Chandran, Siddharthan, Chaturvedi, Nishi, Chêne, Geneviève, Chessell, Iain P., Corbett, Anne, Davis, Daniel H. J., Denis, Mike, Dufouil, Carole, Elliott, Paul, Fox, Nick, Hill, Derek, Hofer, Scott M., Hu, Michele T., Jindra, Christoph, Kee, Frank, Kim, Chi-Hun, Kim, Changsoo, Kivimaki, Mika, Koychev, Ivan, Lawson, Rachael A., Linden, Gerry J., Lyons, Ronan A., Mackay, Clare, Matthews, Paul M., McGuiness, Bernadette, Middleton, Lefkos, Moody, Catherine, Moore, Katrina, Na, Duk L., O'Brien, John T., Ourselin, Sebastien, Paranjothy, Shantini ORCID: https://orcid.org/0000-0002-0528-3121, Park, Ki-Soo, Porteous, David J., Richards, Marcus, Ritchie, Craig W., Rohrer, Jonathan D., Rossor, Martin N., Rowe, James B., Scahill, Rachael, Schnier, Christian, Schott, Jonathan M., Seo, Sang W., South, Matthew, Steptoe, Matthew, Tabrizi, Sarah J., Tales, Andrea, Tillin, Therese, Timpson, Nicholas J., Toga, Arthur W., Visser, Pieter-Jelle, Wade-Martins, Richard, Wilkinson, Tim, Williams, Julie ORCID: https://orcid.org/0000-0002-4069-0259, Wong, Andrew and Gallacher, John E. J. 2020. The Dementias Platform UK (DPUK) data portal. European Journal of Epidemiology 35 , pp. 601-611. 10.1007/s10654-020-00633-4

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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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine MRC Centre for Neuropsychiatric Genetics and Genomics (CNGG)
Additional Information:	Article produced through collaboration with the Dementia Research Institute
Publisher:	Springer Verlag (Germany)
ISSN:	0393-2990
Date of First Compliant Deposit:	20 May 2020
Date of Acceptance:	10 April 2020
Last Modified:	03 May 2023 18:50
URI:	https://orca.cardiff.ac.uk/id/eprint/131825

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