Today, three leading health organisations including a research institute and two research cohorts announced they too are joining the Alliance to develop best practice around the ethical use of health data to improve the population’s health outcomes.
The new members are:
- UK Dementia Research Institute (UKDRI) – the UK’s leading biomedical institute dedicated to neurodegenerative disease, and to changing the lives of the millions affected by dementia worldwide. Hosted across six of the UK’s leading universities, UKDRI scientists, clinicians and technical staff are at the forefront of efforts to find new diagnostics, technologies, and treatments for dementia.
- Medical Research Council (MRC) National Survey of Health and Development (NSHD) – the oldest and longest running of the British birth cohort studies. It is made up of a socially stratified sample of 5,362 singleton babies born to married parents who were selected for follow-up from an initial maternity survey of 13,687 of all births recorded in England, Scotland and Wales during one week in March 1946.
- British Regional Heart Study (BRHS) – a long-term cohort study investigating the causes of cardiovascular disease (CVD) in men and seeking to understand the effect of co-morbidities on CVD & ageing. The BRHS provides a geographically and socially-representative cohort for the prospective investigation of CVD in British men spanning over four decades.
These organisations join 73 existing Alliance members who work together to develop and co-ordinate the adoption of tools, techniques, technologies and standards that enable the use of health data in a trustworthy and ethical way for research and innovation.
In the last year, interest in the UK Alliance has seen its membership grow by 16% with continued enthusiasm for the initiative.
Funded and convened by Health Data Research UK (HDR UK), the members of the Alliance are committed to improving access to data across cohorts, biobanks, NHS trusts, national agencies and programmatic investments.
Professor Caleb Webber, UK Dementia Research Institute Director of Data Science and Informatics, says:
“The UK Dementia Research Institute is thrilled to join the UK Health Data Research Alliance. The UK DRI is a data-driven institute, and joining the Alliance will support us in our goal to equip every researcher with the knowledge to interpret and exploit research data to its fullest potential. This collaboration will hugely help us on our quest to find new treatments and technology to tackle the challenge of dementia.”
Professor Nish Chaturvedi, Principal Investigator at the MRC National Survey of Health and Development, says:
“As the UK’s longest running nationally representative cohort study – the National Survey of Health and Development (NSHD, 1946 British Birth Cohort) is delighted to join the HDR UK Alliance. The NSHD has collected a broad range health data and samples across the life course and the Alliance will be invaluable in promoting the wider access and discovery of these data. Integrating multiple sources of population health data to answer public health questions at scale and speed aligns with our vision, and we are honored to play a key role in this initiative.”
Goya Wannamethee, Director of the British Regional Heart Study, says:
“The BRHS is delighted to become a member of the UK Health Data Research Alliance. We are keen to make our research data accessible to researchers so that it can be fully utilized for the study of cardiovascular disease prevention and healthy cardiovascular ageing”.
The UK Health Data Research Alliance welcomes these new members who, with our current partners, offer an exceptional opportunity by working with the Health Data Research Innovation Gateway to R provide access to rich and diverse health data for research and innovation.
Paola Quattroni, Head of Alliance Strategy and Engagement for HDR UK, says:
“We’ve seen steady growth since we began this initiative, and are delighted to welcome these new members to the Alliance with their diverse data on brain, heart and COVID-19 studies among others. Every new member brings with them vital research data insights that help us in our mission to improve people’s lives.”
Any requests to access data held by Alliance members on the Gateway for research and innovation will continue to go through their existing protocols to ensure strict security and data privacy.
More about our new members:
UKDRI was launched in 2017 and is the single biggest investment the UK has ever made in dementia thanks to founding funders the Medical Research Council (MRC), Alzheimer’s Society and Alzheimer’s Research UK.
The Institute carries out research relevant to all dementias, including Alzheimer’s disease, Parkinson’s disease, frontotemporal dementia, vascular dementia, Huntington’s disease and beyond.
The Prime Minister’s Challenge on Dementia 2020 set a target for research to identify treatments for dementia by 2025 as there are currently no effective therapeutics. The UK DRI is leading the UK’s dementia research efforts and tackling the huge challenge of the condition, which is now the leading cause of death in England and Wales.
The UK DRI breaks new ground by bringing together world-leading expertise in biomedical, care and translational dementia research in a national institute currently made up of over 750 researchers and a support team of over 50, all growing rapidly.
LinkedIn: UK Dementia Research Institute
Since the first initial study, members have been followed up in the course of 27 data collections. Regular interviews with the mothers were conducted by health visitors, with additional assessments by school doctors and teachers. In adult life, research nurses conducted home visits at ages 26, 36, 43, 53 and 69, with a detailed clinic visit taking place between ages 60-64, as well as clinical sub studies focusing on the heart (Myofit46) and brain (Insight46).
In addition to regular postal questionnaires throughout life, there have been annual questionnaires for women (47-54 years) to capture the menopause transition and three waves of COVID-19 questionnaires.
The survey data are accessible to bona fide researchers by applying through the NSHD data sharing platform, Skylark (https://skylark.ucl.ac.uk/). This data can be made available to researchers, for more information please email MRCLHA.email@example.com.
Established in 1978-80, the British Regional Heart Study (BRHS) study has benefited from four repeated assessments of men aged 40-59 years, 60-79, 72-91 and 79-98 years. Participants have been followed up for >40 years at four timepoints in middle-age through to old age for a wide range of health outcomes, including all-cause mortality and cardiovascular disease (CVD) morbidity, physical disability and frailty using GP records and participant questionnaires.
This unique ageing cohort with extensive phenotyping, genotyping and detailed follow-up will contribute to the study of healthy cardiovascular ageing including prevention of CVD, heart failure, stroke, diabetes and related disabilities (frailty, dementia) in older age as well as examining other key health outcomes related to CVD such as physical function, disability, frailty, dental health, malnutrition and sarcopenia.
For any queries or information about how to join the UK Health Data Research Alliance, email firstname.lastname@example.org
Health Data Research UK responds to DHSC Data access policy consultation
7 July 2023
Clarifying policy scope, linkage to non-NHS data, the need for bold approaches to harmonised data access processes, and the role of co-design and public involvement in decision making highlighted...
As the NHS turns 75, and Genomics England 10, a data driven golden age for health is possible
5 July 2023
Ten years ago, on the day the NHS was 65, Genomics England was launched. Setup to deliver the 100,000 Genomes Project, it provided evidence to justify use of whole genome sequencing for individual...