The Alzheimer's Disease (AD) Data Initiative Data Pilots are two exemplar 'data pilot' research projects that aim to answer key dementia research questions, by expanding access to high value UK datasets working in collaboration with international research partners.
Dementia refers to a range of symptoms, such as memory loss, confusion, and communication difficulties, with Alzheimer’s disease being the most common cause. By 2050, the number of people living with dementia in the UK could reach 1.6 million, with an estimated cost to public healthcare of £47 billion.
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.
HDR UK and Alzheimer’s Disease Data Initiative (AD Data Initiative) are working with the University of Edinburgh, Public Health Scotland (PHS) and Moorfields Eye Hospital NHS Foundation Trust in a two-year programme of data pilots, aiming 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.
The AD Data Initiative-HDR UK Data Pilots will enable researchers to harness the power of 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 in the long-term.
Moorfields will lead further development of the AlzEye Dataset, using the infrastructure and data curation capability of the INSIGHT Health Data Research Hub. The AlzEye dataset contains over six million routinely collected retinal images linked to thousands of NHS hospital records including over 13,000 dementia cases and will be used to create the Moorfields Dementia Dataset.
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.
Research projects are being supported to make better use of these data in a safe and secure manner through two exemplar datasets or ‘data pilots’, which have been chosen for their potential to answer key research questions about dementia.
These data pilots are enabling the discovery of the programme’s data through the HDR UK Innovation Gateway and facilitating trustworthy international data sharing through its partnership with the AD Data Initiative’s AD Workbench.
AD Data Initiative Data Pilots objective is to make metadata FAIR for the AlzEye (routine ophthalmic imaging) and SCANDAN (Whole Scottish Routine Medical Imaging) datasets via the Health Data Research Gateway and AD Workbench, and to demonstrate that these can be used by researchers outwith of the host organisation for brain health research.
UK researcher access for these datasets is currently available for request through the Health Data Gateway collection for the Alzheimer’s Disease Data Initiative – Data Pilots, with federated data access using the AD Data Initiative’s AD Workbench being piloted.
Leading health and research organisations announce new collaboration focused on making the most of UK health data to facilitate research into the prevention and treatment of dementia.
Our Brain Health and Neurodegeneration programmes and partnerships aim to bring greater coherence across a complex range of activities.
