| Literature DB >> 32328990 |
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 Elliott14,15,16, 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.
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.Entities:
Keywords: Cohorts; Data access; Data management; Data platform; Data repository; Epidemiology
Mesh:
Year: 2020 PMID: 32328990 PMCID: PMC7320955 DOI: 10.1007/s10654-020-00633-4
Source DB: PubMed Journal: Eur J Epidemiol ISSN: 0393-2990 Impact factor: 8.082