MRC National Survey of Health and Development (NSHD, 1946 British Birth Cohort).
Lead Research Organisation:
University College London
Department Name: MRC Unit for Lifelong Health and Ageing
Abstract
Research context
Currently 9.2 million people, 14% of the UK population, are aged over 70; these numbers will grow rapidly over the next decade. Increases in life expectancy have stalled, and number of years lived in poor health has increased. Dementia, a significant contributor to old age dependency, has overtaken cardiovascular disease as the commonest cause of death. These trends will substantially increase pressure on already stretched health and social care services. Research is urgently needed to find ways of improving healthy ageing throughout life.
The MRC NSHD of 5362 births in 1946 is described as the 'jewel in the crown' of cohorts; it is the longest continually running birth cohort in the world and the oldest of the UK national birth cohorts. It is uniquely placed to address the MRC Strategic Delivery Plan on "promoting healthy ageing & reducing the burden of mental and physical illness throughout life", the UKRI strategic theme of "securing better health, ageing & wellbeing" and PRUK's scope to maximise data potential. Over 2500 participants are in follow up, from 27 sweeps we have extensive biomedical, socioeconomic, cognitive, and physical measures. Biological samples such as blood, urine, saliva and CSF are stored. Repeat brain and cardiac imaging & long term wearable and remote data have been acquired in older age, with ongoing consent for organ donation. Processing, storage, discovery and access infrastructures for these diverse and complex data will secure the long-term legacy of this precious resource.
Participants refer to themselves as the 'Douglas children', named after James Douglas who founded the NSHD, reflecting their lifelong commitment to the study. This is reflected by consistently high response rates to on-going data collections (70-80%) which include questionnaires, intensive clinical sub-studies, lumbar puncture (30%), & organ donation (30%). These exceptionally high responses rates can be contrasted with the much lower response rates in the younger cohorts.
The Centre for Longitudinal Studies (CLS) at UCL curates all successive national birth cohorts (1958, 1970 and 2000). Our alignment with CLS will unify data processes and access to the combined national birth cohort resource.
Aims
We will markedly increase the multidisciplinary use of the NSHD data resource to understand and inform on health and wellbeing throughout life. To achieve this we will improve visibility of and access to the rich whole of life data, enhance this with national record linkage and ensure continued participant engagement with research.
Objectives
To enable linkage of NSHD data to health and administrative records.
To accelerate use of complex and repeat wearable, remote testing, multi-omic and imaging data.
To ensure the 77 years' of historical and ongoing data meet best current standards of practice for data and biosample discoverability, access and usability by a broad base of multidisciplinary researchers.
To establish a single 'front door' to all national birth cohort data with the CLS, establishing common data processes and accelerating use of all 5 national birth cohorts by the biomedical and social science community.
To maintain participant engagement.
To test out different ways of low intensity data collection to inform future grant applications.
Applications and benefits
Accelerate the use of the unique NSHD resource across multiple disciplines
With linkage, enable study of clinical outcomes
Generation of tools to extract analysis-ready variables from complex wearable, remote, imaging and multi-omic data
Greater deployment of all national birth cohorts together to address policy questions
Alignment of new data collection across all national birth cohorts
Set the foundation for greater biomedical data collection in the younger national birth cohorts
Novel insights into the development of peak health adulthood, maintenance in middle age and successful ageing.
Currently 9.2 million people, 14% of the UK population, are aged over 70; these numbers will grow rapidly over the next decade. Increases in life expectancy have stalled, and number of years lived in poor health has increased. Dementia, a significant contributor to old age dependency, has overtaken cardiovascular disease as the commonest cause of death. These trends will substantially increase pressure on already stretched health and social care services. Research is urgently needed to find ways of improving healthy ageing throughout life.
The MRC NSHD of 5362 births in 1946 is described as the 'jewel in the crown' of cohorts; it is the longest continually running birth cohort in the world and the oldest of the UK national birth cohorts. It is uniquely placed to address the MRC Strategic Delivery Plan on "promoting healthy ageing & reducing the burden of mental and physical illness throughout life", the UKRI strategic theme of "securing better health, ageing & wellbeing" and PRUK's scope to maximise data potential. Over 2500 participants are in follow up, from 27 sweeps we have extensive biomedical, socioeconomic, cognitive, and physical measures. Biological samples such as blood, urine, saliva and CSF are stored. Repeat brain and cardiac imaging & long term wearable and remote data have been acquired in older age, with ongoing consent for organ donation. Processing, storage, discovery and access infrastructures for these diverse and complex data will secure the long-term legacy of this precious resource.
Participants refer to themselves as the 'Douglas children', named after James Douglas who founded the NSHD, reflecting their lifelong commitment to the study. This is reflected by consistently high response rates to on-going data collections (70-80%) which include questionnaires, intensive clinical sub-studies, lumbar puncture (30%), & organ donation (30%). These exceptionally high responses rates can be contrasted with the much lower response rates in the younger cohorts.
The Centre for Longitudinal Studies (CLS) at UCL curates all successive national birth cohorts (1958, 1970 and 2000). Our alignment with CLS will unify data processes and access to the combined national birth cohort resource.
Aims
We will markedly increase the multidisciplinary use of the NSHD data resource to understand and inform on health and wellbeing throughout life. To achieve this we will improve visibility of and access to the rich whole of life data, enhance this with national record linkage and ensure continued participant engagement with research.
Objectives
To enable linkage of NSHD data to health and administrative records.
To accelerate use of complex and repeat wearable, remote testing, multi-omic and imaging data.
To ensure the 77 years' of historical and ongoing data meet best current standards of practice for data and biosample discoverability, access and usability by a broad base of multidisciplinary researchers.
To establish a single 'front door' to all national birth cohort data with the CLS, establishing common data processes and accelerating use of all 5 national birth cohorts by the biomedical and social science community.
To maintain participant engagement.
To test out different ways of low intensity data collection to inform future grant applications.
Applications and benefits
Accelerate the use of the unique NSHD resource across multiple disciplines
With linkage, enable study of clinical outcomes
Generation of tools to extract analysis-ready variables from complex wearable, remote, imaging and multi-omic data
Greater deployment of all national birth cohorts together to address policy questions
Alignment of new data collection across all national birth cohorts
Set the foundation for greater biomedical data collection in the younger national birth cohorts
Novel insights into the development of peak health adulthood, maintenance in middle age and successful ageing.
Technical Summary
The MRC NSHD is a national birth cohort investigating life course determinants of health, disease, brain and physical function, & functional changes in older age; linking these with hard outcomes such as disease, hospital admission and death. Collected over 77 years, the NSHD database contains 40000 variables - obtained from questionnaires, school records, home and clinic visits, including complex brain and cardiac imaging data, biosamples, wearable data, and data linkage. It has varying levels of metadata - basic for earlier data through to well-documented and detailed in later years.
We aim to integrate, curate and organise these multiple diverse datatypes over 27 time points to make them widely available and accessible. Embedding operational staff within CLS will increase data science capabilities based on Findable, Accessible, Inter-operable and Reusable principles by working to update, curate and document these data using standardised formats. This work directly aligns with the "enablers of biomedical data science" theme described in the MRC review on "maximising the opportunities from data science for innovative biomedical research". Partnership with the newly established UK Longitudinal Linkage Collaboration, of which we and CLS are Vanguard Groups, offers cost-efficient secure linkage to health and administrative records.
Data deposition in TREs will require ongoing data and study management support whilst enabling sustainable data sharing.
In addition, integration with CLS opens NSHD data to a wider social science audience and, with a common approach to approval for data access & sharing, enables examination of cross national birth cohort trends through a single portal. Appendix 3 illustrates data flows and key players (case for support).
This LPS award will support transition of the enormously rich and unique NSHD to an internationally accessible and usable resource with demonstrable acceleration of research outputs from multiple users & disciplines.
We aim to integrate, curate and organise these multiple diverse datatypes over 27 time points to make them widely available and accessible. Embedding operational staff within CLS will increase data science capabilities based on Findable, Accessible, Inter-operable and Reusable principles by working to update, curate and document these data using standardised formats. This work directly aligns with the "enablers of biomedical data science" theme described in the MRC review on "maximising the opportunities from data science for innovative biomedical research". Partnership with the newly established UK Longitudinal Linkage Collaboration, of which we and CLS are Vanguard Groups, offers cost-efficient secure linkage to health and administrative records.
Data deposition in TREs will require ongoing data and study management support whilst enabling sustainable data sharing.
In addition, integration with CLS opens NSHD data to a wider social science audience and, with a common approach to approval for data access & sharing, enables examination of cross national birth cohort trends through a single portal. Appendix 3 illustrates data flows and key players (case for support).
This LPS award will support transition of the enormously rich and unique NSHD to an internationally accessible and usable resource with demonstrable acceleration of research outputs from multiple users & disciplines.
