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.

Programme overview

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 Data Pilots are enabling international access to valuable UK research datasets. The AD Data Initiative 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 (Moorfields Dementia Dataset) contains over six million routinely collected retinal images linked to thousands of NHS
hospital records including over 13,000 dementia cases. Moorfields Eye Hospital is expanding this resource using infrastructure and data curation capabilities from the INSIGHT Health Data Research Hub.

The University of Edinburgh and PHS are enhancing the comprehensive Scottish Medical Imaging
(SMI) dataset which contains brain imaging from over 1.7 million computed tomography (CT) and magnetic resonance imaging (MRI) studies. Data linkage has been performed with routinely collected health record data across the Scottish population, resulting in a data resource called the Brain Health Data Pilots (Scottish Brain Health Collection on the Gateway).

  • 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.

    The pilots will improve the “research readiness” of data access mechanisms to flagship NHS datasets for research related to Alzheimer’s disease internationally. It is focused on improving use
    of and access to key brain and retinal imaging data from PHS and Moorfields Eye Hospital NHS Foundation Trust. The aim of the pilot is to make data FAIR and demonstrate use by approved researchers through the AD Workbench both within the UK and internationally, in a safe, trustworthy and legally compliant manner.

    These data pilots are enabling the discovery of the programme’s data through the HDR 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.