The Dementias Platform UK (DPUK) Data Portal

Sarah Bauermeister; Christopher Orton; Simon Thompson; Roger A. Barker; Joshua R. Bauermeister; Yoav Ben-Shlomo; Carol Brayne; David Burn; Archie Campbell; Catherine Calvin; Siddharthan Chandran; Nishi Chaturvedi; Geneviève Chêne; Iain P. Chessell; Anne Corbett; Daniel H.J. Davis; Mike Denis; Carole Dufouil; Paul Elliott; Nick Fox; Derek Hill; Scott M. Hofer; Michele T. Hu; Christoph Jindra; Frank Kee; Chi Hun Kim; Changsoo Kim; Mika Kivimaki; Ivan Koychev; Rachael A. Lawson; Gerry J. Linden; Ronan A. Lyons; Clare Mackay; Paul M. Matthews; Bernadette McGuiness; Lefkos Middleton; Catherine Moody; Katrina Moore; Duk L. Na; John T. O’Brien; Sebastien Ourselin; Shantini Paranjothy; Ki Soo Park; David J. Porteous; Marcus Richards; Craig W. Ritchie; Jonathan D. Rohrer; Martin N. Rossor; James B. Rowe; Rachael Scahill; Christian Schnier; Jonathan M. Schott; Sang W. Seo; Matthew South; Matthew Steptoe; Sarah J. Tabrizi; Andrea Tales; Therese Tillin; Nicholas J. Timpson; Arthur W. Toga; Pieter Jelle Visser; Richard Wade-Martins; Tim Wilkinson; Julie Williams; Andrew Wong; John E.J. Gallacher

doi:10.1007/s10654-020-00633-4

The Dementias Platform UK (DPUK) Data Portal

Sarah Bauermeister, Christopher Orton, Simon Thompson, Roger A. Barker, Joshua R. Bauermeister, Yoav Ben-Shlomo, Carol Brayne, David Burn, Archie Campbell, Catherine Calvin, Siddharthan Chandran, Nishi Chaturvedi, Geneviève Chêne, Iain P. Chessell, Anne Corbett, Daniel H.J. Davis, Mike Denis, Carole Dufouil, Paul Elliott, Nick FoxDerek Hill, Scott M. Hofer, Michele T. Hu, Christoph Jindra, Frank Kee, Chi Hun Kim, Changsoo Kim, Mika Kivimaki, Ivan Koychev, Rachael A. Lawson, Gerry J. Linden, Ronan A. Lyons, Clare Mackay, Paul M. Matthews, Bernadette McGuiness, Lefkos Middleton, Catherine Moody, Katrina Moore, Duk L. Na, John T. O’Brien, Sebastien Ourselin, Shantini Paranjothy, Ki Soo Park, David J. Porteous, Marcus Richards, Craig W. Ritchie, Jonathan D. Rohrer, Martin N. Rossor, James B. Rowe, Rachael Scahill, Christian Schnier, Jonathan M. Schott, Sang W. Seo, Matthew South, Matthew Steptoe, Sarah J. Tabrizi, Andrea Tales, Therese Tillin, Nicholas J. Timpson, Arthur W. Toga, Pieter Jelle Visser, Richard Wade-Martins, Tim Wilkinson, Julie Williams, Andrew Wong, John E.J. Gallacher^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

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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.

Original language	English
Pages (from-to)	601-611
Number of pages	11
Journal	European Journal of Epidemiology
Volume	35
Issue number	6
Early online date	23 Apr 2020
DOIs	https://doi.org/10.1007/s10654-020-00633-4
Publication status	Published - 01 Jun 2020

Bibliographical note

Funding Information:
DPUK would like to express gratitude to: Cohort members and their research teams for generously making data available; EMIF-AD for providing access to their data catalogue and supporting software; Professor Ian Deary, Dr Declan Jones and Professor Sir Simon Lovestone for their contribution to this paper from their support in the DPUK Executive Team.

Funding Information:
This work was supported by the UK Research and Innovation Medical Research Council [MR/L023784/1 and MR/L023784/2]. Acknowledgements

Publisher Copyright:
© 2020, The Author(s).

Keywords

Cohorts
Data access
Data management
Data platform
Data repository
Epidemiology

ASJC Scopus subject areas

Epidemiology

Access to Document

10.1007/s10654-020-00633-4Licence: CC BY

The Dementias Platform UK (DPUK) Data Portal
Copyright 2021 the authors. This is an open access article published under a Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium, provided the author and source are cited.
Final published version, 804 KBLicence: CC BY

Cite this

Bauermeister, S., Orton, C., Thompson, S., Barker, R. A., Bauermeister, J. R., Ben-Shlomo, Y., Brayne, C., Burn, D., Campbell, A., Calvin, C., Chandran, S., Chaturvedi, N., Chêne, G., Chessell, I. P., Corbett, A., Davis, D. H. J., Denis, M., Dufouil, C., Elliott, P., ... Gallacher, J. E. J. (2020). The Dementias Platform UK (DPUK) Data Portal. European Journal of Epidemiology, 35(6), 601-611. https://doi.org/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 {\textquoteleft}lab{\textquoteright} 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.",

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author = "Sarah Bauermeister and Christopher Orton and Simon Thompson and Barker, {Roger A.} and Bauermeister, {Joshua R.} and Yoav Ben-Shlomo and Carol Brayne and David Burn and Archie Campbell and Catherine Calvin and Siddharthan Chandran and Nishi Chaturvedi and Genevi{\`e}ve Ch{\^e}ne and Chessell, {Iain P.} and Anne Corbett and Davis, {Daniel H.J.} and Mike Denis and Carole Dufouil and Paul Elliott and Nick Fox and Derek Hill and Hofer, {Scott M.} and Hu, {Michele T.} and Christoph Jindra and Frank Kee and Kim, {Chi Hun} and Changsoo Kim and Mika Kivimaki and Ivan Koychev and Lawson, {Rachael A.} and Linden, {Gerry J.} and Lyons, {Ronan A.} and Clare Mackay and Matthews, {Paul M.} and Bernadette McGuiness and Lefkos Middleton and Catherine Moody and Katrina Moore and Na, {Duk L.} and O{\textquoteright}Brien, {John T.} and Sebastien Ourselin and Shantini Paranjothy and Park, {Ki Soo} and Porteous, {David J.} and Marcus Richards and Ritchie, {Craig W.} and Rohrer, {Jonathan D.} and Rossor, {Martin N.} and Rowe, {James B.} and Rachael Scahill and Christian Schnier and Schott, {Jonathan M.} and Seo, {Sang W.} and Matthew South and Matthew Steptoe and Tabrizi, {Sarah J.} and Andrea Tales and Therese Tillin and Timpson, {Nicholas J.} and Toga, {Arthur W.} and Visser, {Pieter Jelle} and Richard Wade-Martins and Tim Wilkinson and Julie Williams and Andrew Wong and Gallacher, {John E.J.}",

note = "Funding Information: DPUK would like to express gratitude to: Cohort members and their research teams for generously making data available; EMIF-AD for providing access to their data catalogue and supporting software; Professor Ian Deary, Dr Declan Jones and Professor Sir Simon Lovestone for their contribution to this paper from their support in the DPUK Executive Team. Funding Information: This work was supported by the UK Research and Innovation Medical Research Council [MR/L023784/1 and MR/L023784/2]. Acknowledgements Publisher Copyright: {\textcopyright} 2020, The Author(s).",

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Bauermeister, S, Orton, C, Thompson, S, Barker, RA, Bauermeister, JR, Ben-Shlomo, Y, Brayne, C, Burn, D, Campbell, A, Calvin, C, Chandran, S, Chaturvedi, N, Chêne, G, Chessell, IP, Corbett, A, Davis, DHJ, Denis, M, Dufouil, C, Elliott, P, Fox, N, Hill, D, Hofer, SM, Hu, MT, Jindra, C, Kee, F, Kim, CH, Kim, C, Kivimaki, M, Koychev, I, Lawson, RA, Linden, GJ, Lyons, RA, Mackay, C, Matthews, PM, McGuiness, B, Middleton, L, Moody, C, Moore, K, Na, DL, O’Brien, JT, Ourselin, S, Paranjothy, S, Park, KS, Porteous, DJ, Richards, M, Ritchie, CW, Rohrer, JD, Rossor, MN, Rowe, JB, Scahill, R, Schnier, C, Schott, JM, Seo, SW, South, M, Steptoe, M, Tabrizi, SJ, Tales, A, Tillin, T, Timpson, NJ, Toga, AW, Visser, PJ, Wade-Martins, R, Wilkinson, T, Williams, J, Wong, A & Gallacher, JEJ 2020, 'The Dementias Platform UK (DPUK) Data Portal', European Journal of Epidemiology, vol. 35, no. 6, pp. 601-611. https://doi.org/10.1007/s10654-020-00633-4

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T1 - The Dementias Platform UK (DPUK) Data Portal

AU - Bauermeister, Sarah

AU - Orton, Christopher

AU - Thompson, Simon

AU - Barker, Roger A.

AU - Bauermeister, Joshua R.

AU - Ben-Shlomo, Yoav

AU - Brayne, Carol

AU - Burn, David

AU - Campbell, Archie

AU - Calvin, Catherine

AU - Chandran, Siddharthan

AU - Chaturvedi, Nishi

AU - Chêne, Geneviève

AU - Chessell, Iain P.

AU - Corbett, Anne

AU - Davis, Daniel H.J.

AU - Denis, Mike

AU - Dufouil, Carole

AU - Elliott, Paul

AU - Fox, Nick

AU - Hill, Derek

AU - Hofer, Scott M.

AU - Hu, Michele T.

AU - Jindra, Christoph

AU - Kee, Frank

AU - Kim, Chi Hun

AU - Kim, Changsoo

AU - Kivimaki, Mika

AU - Koychev, Ivan

AU - Lawson, Rachael A.

AU - Linden, Gerry J.

AU - Lyons, Ronan A.

AU - Mackay, Clare

AU - Matthews, Paul M.

AU - McGuiness, Bernadette

AU - Middleton, Lefkos

AU - Moody, Catherine

AU - Moore, Katrina

AU - Na, Duk L.

AU - O’Brien, John T.

AU - Ourselin, Sebastien

AU - Paranjothy, Shantini

AU - Park, Ki Soo

AU - Porteous, David J.

AU - Richards, Marcus

AU - Ritchie, Craig W.

AU - Rohrer, Jonathan D.

AU - Rossor, Martin N.

AU - Rowe, James B.

AU - Scahill, Rachael

AU - Schnier, Christian

AU - Schott, Jonathan M.

AU - Seo, Sang W.

AU - South, Matthew

AU - Steptoe, Matthew

AU - Tabrizi, Sarah J.

AU - Tales, Andrea

AU - Tillin, Therese

AU - Timpson, Nicholas J.

AU - Toga, Arthur W.

AU - Visser, Pieter Jelle

AU - Wade-Martins, Richard

AU - Wilkinson, Tim

AU - Williams, Julie

AU - Wong, Andrew

AU - Gallacher, John E.J.

N1 - Funding Information: DPUK would like to express gratitude to: Cohort members and their research teams for generously making data available; EMIF-AD for providing access to their data catalogue and supporting software; Professor Ian Deary, Dr Declan Jones and Professor Sir Simon Lovestone for their contribution to this paper from their support in the DPUK Executive Team. Funding Information: This work was supported by the UK Research and Innovation Medical Research Council [MR/L023784/1 and MR/L023784/2]. Acknowledgements Publisher Copyright: © 2020, The Author(s).

PY - 2020/6/1

Y1 - 2020/6/1

N2 - 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.

AB - 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.

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KW - Data access

KW - Data management

KW - Data platform

KW - Data repository

KW - Epidemiology

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JF - European Journal of Epidemiology

IS - 6

ER -

The Dementias Platform UK (DPUK) Data Portal

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

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