The Dementias Platform UK (DPUK) Data Portal

The Dementias Platform UK (DPUK) 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 (UKSeRP) 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. Project 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.

Ronan A Lyons | Matthew South | Paul M. Matthews | Ivan Koychev | Sarah Bauermeister | Christopher Orton | Simon Thompson | Roger A. Barker | J R Bauermeister | Yoav Ben-Shlomo | Carol Brayne | David J. Burn | Archie Campbell | C Calvin | Siddharthan Chandran | N Chaturvedi | G Chene | I P Chessell | Anne Corbett | D H J Davis | M Denis | C Dufouil | Paul Elliott | N Fox | D Hill | Sm Hofer | Michele T.M. Hu | C Jindra | Frank Kee | C H Kim | Chan Yeong Kim | M Kivimaki | J S K Kwan | Rachael A. Lawson | I Leroi | G J Linden | S Love | S Lovestone | Clare E. Mackay | B McGuiness | Lefkos Middleton | C Moody | K Moore | D L Na | John T. O'Brien | Sebastien Ourselin | Shantini Paranjothy | K S Park | David J. Porteous | M Richards | Craig W. Ritchie | J D Rohrer | M N Rossor | James B. Rowe | R Scahill | Christian Schnier | J M Schott | S W Seo | A Steptoe | S J Tabrizi | A Tales | Alan J. Thomas | T Tillin | N J Timpson | A W Toga | Pieter Jelle Visser | Richard Wade-Martins | Tim Wilkinson | Julie Williams | A Wong | John Gallacher | Alan J. Thomas | J. Gallacher | P. Matthews | A. Toga | N. Timpson | M. South | S. Ourselin | R. Barker | J. O'Brien | J. Rowe | A. Tales | M. Rossor | P. Visser | J. Schott | S. Lovestone | C. Brayne | R. Lyons | D. Porteous | D. Burn | S. Love | Julie Williams | S. Tabrizi | R. Scahill | A. Steptoe | C. Dufouil | D. Na | N. Chaturvedi | J. Rohrer | C. Mackay | S. Chandran | S. Seo | A. Campbell | L. Middleton | Y. Ben-Shlomo | Ivan Koychev | A. Corbett | A. Wong | M. Kivimaki | S. Bauermeister | F. Kee | M. Richards | C. Ritchie | I. Leroi | D. Davis | N. Fox | S. Thompson | R. Wade-Martins | G. Chêne | R. Lawson | K. Park | S. Paranjothy | M. Denis | T. Tillin | K. Moore | J. Kwan | P. Elliott | C. Moody | C. Jindra | T. Wilkinson | C. Schnier | C. Orton | G. Linden | M. Hu | C. Calvin | B. Mcguiness | J. Bauermeister | Chris Orton | S. Hofer | I. Chessell | D. Hill | C. H. Kim | Chan Yeong Kim | Simon Thompson | R. Barker

[1]  D. Kuh,et al.  Cohort Profile: The 1946 National Birth Cohort (MRC National Survey of Health and Development). , 2006, International journal of epidemiology.

[2]  Luca Passamonti,et al.  Neuroimaging of Inflammation in Memory and Related Other Disorders (NIMROD) study protocol: a deep phenotyping cohort study of the role of brain inflammation in dementia, depression and other neurological illnesses , 2017, BMJ Open.

[3]  Brian Lawlor,et al.  Genome-wide Association Study of Alzheimer’s disease with Psychotic Symptoms , 2011, Molecular Psychiatry.

[4]  James B. Rowe,et al.  PET Tau and Amyloid-β Burden in Mild Alzheimer’s Disease: Divergent Relationship with Age, Cognition, and Cerebrospinal Fluid Biomarkers , 2017, Journal of Alzheimer's disease : JAD.

[5]  D. Lawlor,et al.  Cohort Profile: The Avon Longitudinal Study of Parents and Children: ALSPAC mothers cohort , 2012, International journal of epidemiology.

[6]  T M Hayes,et al.  Associations of alcohol consumption with plasma high density lipoprotein cholesterol and its major subfractions: the Caerphilly and Speedwell Collaborative Heart Disease Studies. , 1988, Journal of epidemiology and community health.

[7]  Thomas Foltynie,et al.  Comparative epidemiology of incident Parkinson's disease in Cambridgeshire, UK , 2016, Journal of Neurology, Neurosurgery & Psychiatry.

[8]  D. Lawlor,et al.  Cohort Profile: The ‘Children of the 90s’—the index offspring of the Avon Longitudinal Study of Parents and Children , 2012, International journal of epidemiology.

[9]  Carol Dezateux,et al.  Cohort Profile: the Million Women Study , 2018, International journal of epidemiology.

[10]  Rosa María de la Torre Torres,et al.  Extraterritorial enforcement of the European Union General Regulation on Data Protection (GDPR): consequences for Mexico , 2019 .

[11]  Carol Brayne,et al.  Cohort profile: the Medical Research Council Cognitive Function and Ageing Study (CFAS). , 2006, International journal of epidemiology.

[12]  Ronan A Lyons,et al.  SAIL dementia e-cohort (SAIL-DeC) , 2019 .

[13]  Christian Schnier,et al.  CREATING A DEMENTIA RESEARCH COHORT USING ROUTINELY COLLECTED HEALTHCARE DATA , 2018, Alzheimer's & Dementia.

[14]  P. Francis,et al.  Brains for Dementia Research: Evolution in a Longitudinal Brain Donation Cohort to Maximize Current and Future Value , 2018, Journal of Alzheimer's disease : JAD.

[15]  Sang Won Seo,et al.  A Nomogram for Predicting Amyloid PET Positivity in Amnestic Mild Cognitive Impairment. , 2018, Journal of Alzheimer's disease : JAD.

[16]  Y. Ben-Shlomo,et al.  Parkinson’s Disease Subtypes in the Oxford Parkinson Disease Centre (OPDC) Discovery Cohort , 2015, Journal of Parkinson's disease.

[17]  P. Visscher,et al.  The Lothian Birth Cohort 1936: a study to examine influences on cognitive ageing from age 11 to age 70 and beyond , 2007, BMC geriatrics.

[18]  P. Elliott,et al.  UK Biobank: An Open Access Resource for Identifying the Causes of a Wide Range of Complex Diseases of Middle and Old Age , 2015, PLoS medicine.

[19]  Erik Schultes,et al.  The FAIR Guiding Principles for scientific data management and stewardship , 2016, Scientific Data.

[20]  A. Fehily,et al.  Caerphilly and Speedwell collaborative heart disease studies. The Caerphilly and Speedwell Collaborative Group. , 1984, Journal of epidemiology and community health.

[21]  Yongwhi Park,et al.  Relationship between endothelial function and skeletal muscle strength in community dwelling elderly women , 2018, Journal of cachexia, sarcopenia and muscle.

[22]  Robert Grafton Small,et al.  Platform , 2015, Encyclopedic Dictionary of Archaeology.

[23]  Josip Car,et al.  Development of the CHARIOT Research Register for the Prevention of Alzheimer’s Dementia and Other Late Onset Neurodegenerative Diseases , 2015, PloS one.

[24]  Diana Kuh,et al.  The delirium and population health informatics cohort study protocol: ascertaining the determinants and outcomes from delirium in a whole population , 2018, bioRxiv.

[25]  Andrew Steptoe,et al.  COHORT PROFILE Cohort Profile : The English Longitudinal Study of Ageing , 2014 .

[26]  C. Fombrun,et al.  Matrix , 1979, Encyclopedic Dictionary of Archaeology.

[27]  Nicholas J Wareham,et al.  Cohort Profile: A prospective cohort study of objective physical and cognitive capability and visual health in an ageing population of men and women in Norfolk (EPIC-Norfolk 3) , 2013, International journal of epidemiology.

[28]  Jeanette Spear,et al.  The Airwave Health Monitoring Study of police officers and staff in Great Britain: rationale, design and methods. , 2014, Environmental research.

[29]  Clare E. Mackay,et al.  PET Tau and Amyloid-beta Burden in Mild Alzheimer's Disease: Divergent Relationship with Age, Cognition, and Cerebrospinal Fluid Biomarkers (vol 60, pg 283, 2017) , 2018 .

[30]  R. Dobson,et al.  The EMIF-AD Multimodal Biomarker Discovery study: design, methods and cohort characteristics , 2018, Alzheimer's Research & Therapy.

[31]  E E KRAPF,et al.  On Ageing , 1953, Proceedings of the Royal Society of Medicine.

[32]  T. Robbins,et al.  The cognitive ability of an incident cohort of Parkinson's patients in the UK. The CamPaIGN study. , 2004, Brain : a journal of neurology.

[33]  PET Tau and Amyloid-β Burden in Mild Alzheimer's Disease: Divergent Relationship with Age, Cognition, and Cerebrospinal Fluid Biomarkers. , 2018, Journal of Alzheimer's disease : JAD.

[34]  Yoav Ben-Shlomo,et al.  Auditory threshold, phonologic demand, and incident dementia , 2012, Neurology.

[35]  James M. Norris,et al.  Directory , 2002, Geological Society, London, Memoirs.

[36]  Gareth John,et al.  A Platform for the Remote Conduct of Gene-Environment Interaction Studies , 2013, PloS one.

[37]  Nick C Fox,et al.  Clinical and biomarker changes in dominantly inherited Alzheimer's disease. , 2012, The New England journal of medicine.

[38]  Sebastian Palmqvist,et al.  Validation of brief cognitive tests in mild cognitive impairment, Alzheimer's disease and dementia with Lewy bodies. , 2011 .

[39]  Cam-CAN Group,et al.  The Cambridge Centre for Ageing and Neuroscience (Cam-CAN) data repository: Structural and functional MRI, MEG, and cognitive data from a cross-sectional adult lifespan sample , 2017, NeuroImage.

[40]  Karen Ritchie,et al.  The PREVENT study: a prospective cohort study to identify mid-life biomarkers of late-onset Alzheimer's disease , 2012, BMJ Open.

[41]  Enrico Amico,et al.  Identification of genetic variants associated with Huntington's disease progression: a genome-wide association study. , 2017, The Lancet. Neurology.

[42]  Olivier Rouaud,et al.  Cognitive and imaging markers in non-demented subjects attending a memory clinic: study design and baseline findings of the MEMENTO cohort , 2017, Alzheimer's Research & Therapy.

[43]  L. Robinson,et al.  A two decade dementia incidence comparison from the Cognitive Function and Ageing Studies I and II , 2016, Nature Communications.

[44]  Nish Chaturvedi,et al.  Southall And Brent REvisited: Cohort profile of SABRE, a UK population-based comparison of cardiovascular disease and diabetes in people of European, Indian Asian and African Caribbean origins. , 2012, International journal of epidemiology.

[45]  A. Toga,et al.  The Global Alzheimer's Association Interactive Network , 2016, Alzheimer's & Dementia.

[46]  T. Robbins,et al.  Characterizing mild cognitive impairment in incident Parkinson disease , 2014, Neurology.

[47]  Archie Campbell,et al.  Cohort Profile: Generation Scotland: Scottish Family Health Study (GS:SFHS). The study, its participants and their potential for genetic research on health and illness. , 2013, International journal of epidemiology.

[48]  Dina Aronzon,et al.  tranSMART: An Open Source Knowledge Management and High Content Data Analytics Platform , 2014, AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science.