Cohorts and data collection

Lead Research Organisation: University College London

Abstract

Our work requires substantial data collection from our population cohorts, and putting structures in place to check, take care of and share data in a secure way with other scientific researchers. Our core cohort is the MRC National Survey of Health and Development, (1946 UK birth cohort), but we also manage other cohorts such as DELPHIC (Camden based population cohort of older people), and SABRE (a tri-ethnic London based population cohort). Our research uses these and other cohorts to answer specific scientific questions.

Technical Summary

Aim
This theme serves the underpinning cohort platforms, providing essential data for all programmes.
Research Objectives
We plan core data collection on key health and sociodemographic variables as identified in individual programmes. We build on the strengths of the well-established core funded MRC National Survey of Health and Development (NSHD) and will capitalise on linkages with the WT funded Delirium and Population Health Informatics Cohort (DELPHIC) cohort. Investigators within the Unit also lead the Southall and Brent REvisited (SABRE) tri-ethnic older age cohort which has complementary data of relevance to some programmes.
Methods
The Cohorts and Data Collection theme has two sub-themes; the first is Data Collection, concerned with de novo clinical, home visit and questionnaire data capture for the current QQ, and the second is Cohort Maintenance, which is concerned with data and sample curation, linkages, and overall Unit management.
Translational aspects, and public health exploitation are detailed in individual programmes.

Publications

10 25 50
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Bauermeister S (2020) The Dementias Platform UK (DPUK) Data Portal. in European journal of epidemiology

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Lu K (2020) Increased variability in reaction time is associated with amyloid beta pathology at age 70. in Alzheimer's & dementia (Amsterdam, Netherlands)

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Maddock J (2020) DNA Methylation Age and Physical and Cognitive Aging. in The journals of gerontology. Series A, Biological sciences and medical sciences

 
Description CLOSER 
Organisation University College London
Department Institute of Education (IOE)
Country United Kingdom 
Sector Academic/University 
PI Contribution Leading on work packages and the teaching aspect of CLOSER. This includes data analysis, preparing and commenting on manuscripts, organising workshops, seminars and conferences. Members of the executive group and CLOSER communications network.
Collaborator Contribution CLOSER (Cohort & Longitudinal Studies Enhancement Resources) aims to maximise their use, value and impact both at home and abroad. Bringing together eight leading studies, the British Library and the UK Data Service, CLOSER works to stimulate interdisciplinary research, develop shared resources, provide training, and share expertise. In this way CLOSER is helping to build the body of knowledge on how life in the UK is changing - both across generations and in comparison to the rest of the world.
Impact Johnson 2017 PMID:28072856 Bann 2017 PMID: 28072856 2 successful bids to the innovation fund 2 successful bids to the innovation fund Bann, D, Johnson, W, Li, L, Kuh, D, Hardy, R. Socioeconomic inequalities in body mass index, weight, and height in childhood and adolescence: coordinated analyses of individual participant data from four British birth cohort studies initiated in 1946, 1958, 1970, and 2000/1. Lancet Public Health 2018 Apr;3(4):e194-e203. doi: 10.1016/S2468-2667(18)30045-8. Epub 2018 Mar 21.
Start Year 2012
 
Description Calibration Study 
Organisation University of Southampton
Country United Kingdom 
Sector Academic/University 
PI Contribution Provide equipment to be used in calibration study. Expertise with analysis and manuscript preparation
Collaborator Contribution PhD student to carry out the analysis of the results of the calibration study and write manuscripts
Impact Numerous poster/abstract presentations at conferences paper in preparation
Start Year 2015
 
Description Laura Howe Bristol Adversity 
Organisation University of Bristol
Country United Kingdom 
Sector Academic/University 
PI Contribution Contribution of NSHD data, data analysis expertise, manuscript preparation, epidemiology expertise
Collaborator Contribution Contribution of data analysis expertise, manuscript preparation, epidemiology expertise
Impact Sucessful grant applications PMID: 32098806 PMID: 30510187 PMID: 30468142 PMID: 29365106 PMID: 29092899 PMID: 28882142 PMID: 28553793 PMID: 27681097 PMID: 27466311
Start Year 2014
 
Description NCD Risk Factor Collaboration 
Organisation Imperial College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Provide NSHD data and advice on manuscript preparation and analysis
Collaborator Contribution Analysis of data and creation of manuscripts
Impact PMID 27061677 Trends in diabetes PMID 27458798 Adult human height PMID 27115820 Trends in adult BMI PMID 27863813 Trends in blood pressure NCD Risk Factor Collaboration (NCD-RisC). Worldwide trends in body mass index, underweight, overweight and obesity from 1975 to 2016: a pooled analysis of 2,416 population-based measurement studies with 128.9 million children, adolescents and adults.PMID: 29029897 2017 Dec 16;390(10113):2627-2642. doi: 10.1016/S0140-6736(17)32129-3. NCD Risk Factor Collaboration 'Contributions of mean and shape of blood pressure distribution to worldwide trends and variations in raised blood pressure: a pooled analysis of 1018 population-based measurement studies with 88.6 million participants' International Journal of Epidemiology. . 2018 Mar 19. doi: 10.1093/ije/dyy016. [Epub ahead of print] Most recent wave of data added in
Start Year 2016
 
Description UCLEB 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution NSHD data sharing and epideomiological experitise
Collaborator Contribution Maximising research potential of NSHD Prof Aroon Hinorani brings in CVD and genetic skills and manages the collaboration with several CVD cohort studies at UCL and Edinburgh, including NSHD. Data sharing
Impact UCL Biomedical Research Centre High Impact Grant awarded BHF programme grant under review 23977022 White 26781229 Neusch 25979724 Talmund 25475436 White 26781229 Beaney 27549350 Morris 27365493 Prins 27327646 Beaney KE. Functional analysis of the coronary heart disease risk locus on chromosome 21q22. PMID:28458444 PMC5387827 Dale C. Causal Associations of Adiposity and Body Fat Distribution with Coronary Heart Disease, Stroke Subtypes and Type 2 Diabetes: A Mendelian Randomization Analysis. PMID: 28500271 PMC5515354 Fairoozy R. Identifying Low Density Lipoprotein Cholesterol Associated Variants in the Annexin A2 (ANXA2) Gene. PMID:28456096 PMC5446264 Franceschini N, Giambartolomei C, de Vries PS, Finan C, Bis JC, Huntley RP, Lovering RC, Tajuddin SM, Winkler TW, Graff M, Kavousi M, Dale C, Smith AV, Hofer E, van Leeuwen EM, Nolte IM, Lu L, Scholz M, Sargurupremraj M, Pitkänen N, Franzén O, Joshi PK, Noordam R, Marioni RE, Hwang SJ, Musani SK, Schminke U, Palmas W, Isaacs A, Correa A, Zonderman AB, Hofman A, Teumer A, Cox AJ, Uitterlinden AG, Wong A, Smit AJ, Newman AB, Britton A, Ruusalepp A, Sennblad B, Hedblad B, Pasaniuc B, Penninx BW, Langefeld CD, Wassel CL, Tzourio C, Fava C, Baldassarre D, O'Leary DH, Teupser D, Kuh D, Tremoli E, Mannarino E, Grossi E, Boerwinkle E, Schadt EE, Ingelsson E, Veglia F, Rivadeneira F, Beutner F, Chauhan G, Heiss G, Snieder H, Campbell H, Völzke H, Markus HS, Deary IJ, Jukema JW, de Graaf J, Price J, Pott J, Hopewell JC, Liang J, Thiery J, Engmann J, Gertow K, Rice K, Taylor KD, Dhana K, Kiemeney LALM, Lind L, Raffield LM, Launer LJ, Holdt LM, Dörr M, Dichgans M, Traylor M, Sitzer M, Kumari M, Kivimaki M, Nalls MA, Melander O, Raitakari O, Franco OH, Rueda-Ochoa OL, Roussos P, Whincup PH, Amouyel P, Giral P, Anugu P, Wong Q, Malik R, Rauramaa R, Burkhardt R, Hardy R, Schmidt R, de Mutsert R, Morris RW, Strawbridge RJ, Wannamethee SG, Hägg S, Shah S, McLachlan S, Trompet S, Seshadri S, Kurl S, Heckbert SR, Ring S, Harris TB, Lehtimäki T, Galesloot TE, Shah T, de Faire U, Plagnol V, Rosamond WD, Post W, Zhu X, Zhang X, Guo X, Saba Y; MEGASTROKE Consortium, Dehghan A, Seldenrijk A, Morrison AC, Hamsten A, Psaty BM, van Duijn CM, Lawlor DA, Mook-Kanamori DO, Bowden DW, Schmidt H, Wilson JF, Wilson JG, Rotter JI, Wardlaw JM, Deanfield J, Halcox J, Lyytikäinen LP, Loeffler M, Evans MK, Debette S, Humphries SE, Völker U, Gudnason V, Hingorani AD, Björkegren JLM, Casas JP, O'Donnell CJ. GWAS and colocalization analyses implicate carotid intima-media thickness and carotid plaque loci in cardiovascular outcomes. Nat Commun. 2018 Dec 3;9(1):5141. doi: 10.1038/s41467-018-07340-5. PMID: 30510157 PMID: 32114887 PMID: 31088856
Start Year 2008
 
Description UCLEB 
Organisation University of Bristol
Country United Kingdom 
Sector Academic/University 
PI Contribution NSHD data sharing and epideomiological experitise
Collaborator Contribution Maximising research potential of NSHD Prof Aroon Hinorani brings in CVD and genetic skills and manages the collaboration with several CVD cohort studies at UCL and Edinburgh, including NSHD. Data sharing
Impact UCL Biomedical Research Centre High Impact Grant awarded BHF programme grant under review 23977022 White 26781229 Neusch 25979724 Talmund 25475436 White 26781229 Beaney 27549350 Morris 27365493 Prins 27327646 Beaney KE. Functional analysis of the coronary heart disease risk locus on chromosome 21q22. PMID:28458444 PMC5387827 Dale C. Causal Associations of Adiposity and Body Fat Distribution with Coronary Heart Disease, Stroke Subtypes and Type 2 Diabetes: A Mendelian Randomization Analysis. PMID: 28500271 PMC5515354 Fairoozy R. Identifying Low Density Lipoprotein Cholesterol Associated Variants in the Annexin A2 (ANXA2) Gene. PMID:28456096 PMC5446264 Franceschini N, Giambartolomei C, de Vries PS, Finan C, Bis JC, Huntley RP, Lovering RC, Tajuddin SM, Winkler TW, Graff M, Kavousi M, Dale C, Smith AV, Hofer E, van Leeuwen EM, Nolte IM, Lu L, Scholz M, Sargurupremraj M, Pitkänen N, Franzén O, Joshi PK, Noordam R, Marioni RE, Hwang SJ, Musani SK, Schminke U, Palmas W, Isaacs A, Correa A, Zonderman AB, Hofman A, Teumer A, Cox AJ, Uitterlinden AG, Wong A, Smit AJ, Newman AB, Britton A, Ruusalepp A, Sennblad B, Hedblad B, Pasaniuc B, Penninx BW, Langefeld CD, Wassel CL, Tzourio C, Fava C, Baldassarre D, O'Leary DH, Teupser D, Kuh D, Tremoli E, Mannarino E, Grossi E, Boerwinkle E, Schadt EE, Ingelsson E, Veglia F, Rivadeneira F, Beutner F, Chauhan G, Heiss G, Snieder H, Campbell H, Völzke H, Markus HS, Deary IJ, Jukema JW, de Graaf J, Price J, Pott J, Hopewell JC, Liang J, Thiery J, Engmann J, Gertow K, Rice K, Taylor KD, Dhana K, Kiemeney LALM, Lind L, Raffield LM, Launer LJ, Holdt LM, Dörr M, Dichgans M, Traylor M, Sitzer M, Kumari M, Kivimaki M, Nalls MA, Melander O, Raitakari O, Franco OH, Rueda-Ochoa OL, Roussos P, Whincup PH, Amouyel P, Giral P, Anugu P, Wong Q, Malik R, Rauramaa R, Burkhardt R, Hardy R, Schmidt R, de Mutsert R, Morris RW, Strawbridge RJ, Wannamethee SG, Hägg S, Shah S, McLachlan S, Trompet S, Seshadri S, Kurl S, Heckbert SR, Ring S, Harris TB, Lehtimäki T, Galesloot TE, Shah T, de Faire U, Plagnol V, Rosamond WD, Post W, Zhu X, Zhang X, Guo X, Saba Y; MEGASTROKE Consortium, Dehghan A, Seldenrijk A, Morrison AC, Hamsten A, Psaty BM, van Duijn CM, Lawlor DA, Mook-Kanamori DO, Bowden DW, Schmidt H, Wilson JF, Wilson JG, Rotter JI, Wardlaw JM, Deanfield J, Halcox J, Lyytikäinen LP, Loeffler M, Evans MK, Debette S, Humphries SE, Völker U, Gudnason V, Hingorani AD, Björkegren JLM, Casas JP, O'Donnell CJ. GWAS and colocalization analyses implicate carotid intima-media thickness and carotid plaque loci in cardiovascular outcomes. Nat Commun. 2018 Dec 3;9(1):5141. doi: 10.1038/s41467-018-07340-5. PMID: 30510157 PMID: 32114887 PMID: 31088856
Start Year 2008
 
Description UCLEB 
Organisation University of Edinburgh
Country United Kingdom 
Sector Academic/University 
PI Contribution NSHD data sharing and epideomiological experitise
Collaborator Contribution Maximising research potential of NSHD Prof Aroon Hinorani brings in CVD and genetic skills and manages the collaboration with several CVD cohort studies at UCL and Edinburgh, including NSHD. Data sharing
Impact UCL Biomedical Research Centre High Impact Grant awarded BHF programme grant under review 23977022 White 26781229 Neusch 25979724 Talmund 25475436 White 26781229 Beaney 27549350 Morris 27365493 Prins 27327646 Beaney KE. Functional analysis of the coronary heart disease risk locus on chromosome 21q22. PMID:28458444 PMC5387827 Dale C. Causal Associations of Adiposity and Body Fat Distribution with Coronary Heart Disease, Stroke Subtypes and Type 2 Diabetes: A Mendelian Randomization Analysis. PMID: 28500271 PMC5515354 Fairoozy R. Identifying Low Density Lipoprotein Cholesterol Associated Variants in the Annexin A2 (ANXA2) Gene. PMID:28456096 PMC5446264 Franceschini N, Giambartolomei C, de Vries PS, Finan C, Bis JC, Huntley RP, Lovering RC, Tajuddin SM, Winkler TW, Graff M, Kavousi M, Dale C, Smith AV, Hofer E, van Leeuwen EM, Nolte IM, Lu L, Scholz M, Sargurupremraj M, Pitkänen N, Franzén O, Joshi PK, Noordam R, Marioni RE, Hwang SJ, Musani SK, Schminke U, Palmas W, Isaacs A, Correa A, Zonderman AB, Hofman A, Teumer A, Cox AJ, Uitterlinden AG, Wong A, Smit AJ, Newman AB, Britton A, Ruusalepp A, Sennblad B, Hedblad B, Pasaniuc B, Penninx BW, Langefeld CD, Wassel CL, Tzourio C, Fava C, Baldassarre D, O'Leary DH, Teupser D, Kuh D, Tremoli E, Mannarino E, Grossi E, Boerwinkle E, Schadt EE, Ingelsson E, Veglia F, Rivadeneira F, Beutner F, Chauhan G, Heiss G, Snieder H, Campbell H, Völzke H, Markus HS, Deary IJ, Jukema JW, de Graaf J, Price J, Pott J, Hopewell JC, Liang J, Thiery J, Engmann J, Gertow K, Rice K, Taylor KD, Dhana K, Kiemeney LALM, Lind L, Raffield LM, Launer LJ, Holdt LM, Dörr M, Dichgans M, Traylor M, Sitzer M, Kumari M, Kivimaki M, Nalls MA, Melander O, Raitakari O, Franco OH, Rueda-Ochoa OL, Roussos P, Whincup PH, Amouyel P, Giral P, Anugu P, Wong Q, Malik R, Rauramaa R, Burkhardt R, Hardy R, Schmidt R, de Mutsert R, Morris RW, Strawbridge RJ, Wannamethee SG, Hägg S, Shah S, McLachlan S, Trompet S, Seshadri S, Kurl S, Heckbert SR, Ring S, Harris TB, Lehtimäki T, Galesloot TE, Shah T, de Faire U, Plagnol V, Rosamond WD, Post W, Zhu X, Zhang X, Guo X, Saba Y; MEGASTROKE Consortium, Dehghan A, Seldenrijk A, Morrison AC, Hamsten A, Psaty BM, van Duijn CM, Lawlor DA, Mook-Kanamori DO, Bowden DW, Schmidt H, Wilson JF, Wilson JG, Rotter JI, Wardlaw JM, Deanfield J, Halcox J, Lyytikäinen LP, Loeffler M, Evans MK, Debette S, Humphries SE, Völker U, Gudnason V, Hingorani AD, Björkegren JLM, Casas JP, O'Donnell CJ. GWAS and colocalization analyses implicate carotid intima-media thickness and carotid plaque loci in cardiovascular outcomes. Nat Commun. 2018 Dec 3;9(1):5141. doi: 10.1038/s41467-018-07340-5. PMID: 30510157 PMID: 32114887 PMID: 31088856
Start Year 2008
 
Title New data sharing platform - Skylark 
Description Skylark is our new data sharing platform. Skylark is aimed at providing researchers with all the information they need to apply for survey data from the NSHD. Skylark is composed of two companion systems: A wiki (https://skylark.ucl.ac.uk) provides users with a detailed description of the study including all data collections across its 70+ years. The wiki includes: 1. background information about the NSHD; 2. all annotated questionnaires and other paper instruments; 3. a description of the major topics, including information on repeated measures and standard variables; 4. information about the variable search facility and guides on how to locate variables; 5. NSHD information governance; 6. a complete description of the NSHD data sharing process, including all the forms necessary to set up a data sharing agreement and submit a data access request. A variable search facility (https://skylark/ucl.ac.uk/Skylark) provides a platform to locate metadata covering more than 25,000 NSHD variables. Users will need to register, before they can log in to search for variables of interest, which can then be added to personal shopping baskets and saved. Following a successful data sharing application and satisfactory information security assessment, these baskets will then be processed by NSHD staff and the data sent out. This is different from our current data sharing platform, SWIFT, is that it is more secure, transparent and the process of data sharing will be more automated. Data applications are now all completed on line improvements are continuously being made to this platform 
Type Of Technology New/Improved Technique/Technology 
Year Produced 2018 
Impact We are in the testing phase, with a full launch scheduled for end of September / beginning of October. 
URL https://skylark.ucl.ac.uk
 
Description Its all academic 2019 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact LHA took part in the UCL Its all academic festival. LHA had their Game of Life activity which was an interactive game where participants learnt about our longitudinal research into healthy ageing.
Year(s) Of Engagement Activity 2019
 
Description Keir Starmer MP Research visit 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Local MP, Sir Keir Starmer was invited to the MRC Festival of Medical Research but he was unable to attend. However, he offered to visit the units, who were taking part in the Festival. We and the MRC LMBC took up the opportunity to meet Keir. He met with staff, who explained about the cohort studies we have at the Unit - MRC NSHD, SABRE, LINKAGE and Insight 46 (a substudy of the MRC NSHD).
Year(s) Of Engagement Activity 2019
 
Description MRC Festival June 2019 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact LHA hosted a Science Fair at UCL with the MRC Laboratory for Medical Cell Biology and the MRC Prion. This was a free family fun day for all ages and included hands-on activities, interactive demonstrations, games and exhibitions. LHA had their Game of Life activity which was an interactive game where participants learnt about our longitudinal research into healthy ageing.
Year(s) Of Engagement Activity 2019
 
Description Non communicable diseaes in South Asia Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact NCD in South Asia Workshop 23rd to 24th Jan 2020. Led by Academy of Medical Sciences. Steering committee member, chair and facilitator. Bringing regional experts in NCDs together to discuss research state, gaps, and initiatives. Following the workshop, a written report is being produced and will be disseminated to stakeholders within the region and the UK highlighting the identified next steps to help tackle NCDs South Asia.
Year(s) Of Engagement Activity 2020
 
Description Science Museum Lates 2019 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact LHA took their Life Course Golf Course activity to the Science Museum Lates. Participants were taken round the miniature golf course by our researchers (the caddy) and learnt about our longitudinal research into healthy ageing
Year(s) Of Engagement Activity 2019