Health Data Research UK (HDR UK), the Alzheimer’s Disease Data Initiative (ADDI), the University of Edinburgh, Public Health Scotland (PHS) and Moorfields Eye Hospital NHS Foundation Trust (Moorfields) have today announced a new partnership to transform research on neurodegeneration and brain health.
The term dementia is used to describe a group of symptoms, including memory loss, confusion, and communication difficulties. Alzheimer’s disease is the most common cause. The number of people living with dementia in the UK could reach 1.6 million by 2050 with an estimated cost to public healthcare of £47 billion.
Dementia is a significant public health issue affecting the lives of individuals, families and wider communities. Enabling better access to health data to improve our understanding of brain health has the potential to improve the lives of people living with dementia. Diagnosis is often delayed, there are few treatments and care pathways vary across the UK.
Data pilots for dementia research
HDR UK and ADDI will work with the University of Edinburgh, PHS and Moorfields in a two-year pilot to make some of the UK’s most comprehensive routine health imaging data more findable and accessible for dementia research projects both within the UK and internationally. This will be demonstrated with two exemplar datasets or ‘data pilots’ which have been chosen because of their potential to answer key research questions about dementia.
Moorfields will lead further development of the AlzEye Dataset, using the infrastructure and data curation capability of the INSIGHT Health Data Research Hub. AlzEye contains over six million routinely collected retinal images linked to thousands of NHS hospital records including over 13,000 dementia cases. The University of Edinburgh and PHS will lead the enhancement of SCANDAN, a comprehensive brain imaging dataset from 1.7 million CT and magnetic resonance imaging (MRI) studies linked to radiologists’ reports, health records and prescribing data, plus subsets linked to genome-wide data, across the whole Scottish population.
Researchers will be supported to make better use of these data in a safe and secure way to address a range of research questions, such as predicting the onset of dementia ahead of symptom development, which can pave the way for recruitment into clinical trials and treatments. The partnership will also pilot ADDI’s AD Workbench, a secure, global platform, to facilitate trustworthy international data sharing and access for dementia researchers, supporting collaborative research to accelerate diagnosis and treatments for dementia patients on a global scale.
Andrew Morris, Director of HDR UK said:
“We are delighted to be working with ADDI and UK partners to pool our collective expertise and establish new ways to make large-scale, real-world health data more readily available to facilitate dementia research in a secure and trustworthy way.”
Tetsuyuki Maruyama, Executive Director of ADDI said:
“The lack of diverse and inclusive datasets available for researchers has been a huge a barrier to making progress in our understanding of Alzheimer’s disease. We look forward to seeing how we can tackle this together with HDR UK.”
William Whiteley, Professor of Neurology and Epidemiology at the University of Edinburgh said:
“Brain scans are a very important part of dementia diagnosis. We are looking forward to addressing the challenges of sharing images safely for research to improve the prediction and prevention of dementia.”
Carole Morris, Head of Data and Modelling Services at PHS, said:
“PHS is delighted to be part of this significant collaboration in working to prevent and treat dementia in Scotland and across the UK. Together with the University of Edinburgh and the University of Dundee, we’re leading on the use of The Scottish Medical Imaging (SMI) Service, part of the electronic Data Research and Innovation Service (eDRIS) team within Public Health Scotland.
This partnership is exactly the type of research that these real-world medical images can aid in. It will demonstrate the power and intelligence that can be derived from NHS Scotland’s excellent medical imaging data and has the potential to benefit all those living with neurodegeneration, and their families.”
Pearse Keane, Director of the INSIGHT Health Data Research Hub at Moorfields, said:
“We have already established a link between changes in the retina and Alzheimer’s, but this new partnership will allow us to grow the scale and diversity of our existing data, providing a resource for investigating whether dementia can be detected in the retina before it appears elsewhere.”
The ADDI-HDR UK Data Pilot will enable researchers to harness the power of the health data to transform our understanding of Alzheimer’s disease and other types of dementia. The initiative will unlock potential data-driven solutions for faster diagnosis and better treatment options to improve both patient and public health outcomes for the long-term.
The ADDI-HDR UK announcement builds on the launch of NEURii – a collaboration setup to tackle the challenges of dementia research through health data and artificial intelligence – and extends HDR UK’s commitment to advancing insights into brain health through the application of cutting-edge data science.
The Alzheimer’s Disease Data Initiative is a coalition of leading academic, advocacy, government, industry, and philanthropic organisations that recognises the need for dementia researchers to find easier ways to share unpublished data, analytical tools, and scientific findings.
About HDR UK
Health Data Research UK is the national institute for health data with a mission to unite the UK’s health data to enable discoveries that improve people’s lives. It is a charity funded by UK Research and Innovation, the Department of Health and Social Care in England and equivalents in Northern Ireland, Wales and Scotland, and leading medical research charities.
About the University of Edinburgh
The University of Edinburgh is one of the world’s top research-intensive universities, ranked 4th in the UK for research power (Times Higher Education’s REF power ratings), with 90% of its research activity classified as world leading or internationally excellent in the 2021 Research Excellence Framework.
About Public Health Scotland
Public Health Scotland is an NHS Board, uniquely sponsored by the Scottish Government and the Convention of Scottish Local Authorities (COSLA) on behalf of local government. Since 1 April 2020, PHS has been leading and supporting Scotland to respond to its health challenges to make a difference to the lives of people in its communities.
About Moorfields Eye Hospital NHS Foundation Trust
Moorfields Eye Hospital NHS Foundation Trust is the leading provider of eye health services in the UK and a world-class centre of excellence for ophthalmic research and education. It partners with the UCL Institute of Ophthalmology to lead one of the strongest and most extensive ophthalmic research programmes in the world.
The INSIGHT Hub at Moorfields
INSIGHT is the world’s largest ophthalmic bioresource with over 25 million retinal images and associated clinical data. INSIGHT makes routinely collected, anonymised, eye data available for approved research to advance development of new healthcare treatments and diagnostic technologies for eye disease and systemic diseases such as diabetes and dementia.
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