Neurological conditions are the leading cause of ill health and disability worldwide, with over 1 in 3 people affected. Accelerating the trustworthy use of large-scale data assets is essential to unlock urgently needed research breakthroughs.

Over the past few years, we have been working on multiple initiatives to strengthen health data research in brain health and neurodegeneration. We now have the opportunity to showcase some of this work at the Clinical Trials on Alzheimer’s Disease (CTAD) Conference – one of the most important gatherings in the Alzheimer’s research community. It was created by researchers for researchers, and since it was founded in 2008, meaningful research progress has resulted from the annual meetings.

CTAD maintains a small and intentionally intimate atmosphere where researchers can have focused conversations that lead to collaborations. This approach of partnership and collaboration aligns perfectly with Health Data Research UK’s (HDR UK) vision to unite health data and make it accessible to researchers and innovators.

HDR UK’s Brain Health and Neurodegeneration team are presenting three posters at CTAD, in the hope it will stimulate discussion among the community. The posters summarise three of our key projects: the Alzheimer’s Disease Data Initiative Data Pilots; Brain Health Data Pilots; and the Dementia Trials Accelerator.

Alzheimer’s Disease Data Initiative Data Pilots

These data pilot projects aim to remove some of the barriers to international collaboration and answer key research questions in dementia.

The University of Edinburgh and Public Health Scotland data pilot is exploring whether ‘brain age’ is related to the chance of dementia and harnesses the power of data; linking datasets to build a foundation model to better understand underlying patterns that would not be visible when working with data silos.

The Moorfields Eye Hospital NHS Foundation Trust Data Pilot is investigating whether early predictors of dementia onset could be identified through retinal scans. This data is also being used to explore whether looking at the difference in retinal nerves between the two eyes of the same individual can help distinguish vascular dementia from Alzheimer’s disease.

These data pilots are demonstrating that enabling secure and trustworthy international research access to brain and retinal data in a federated manner has the potential to make a huge difference in neurodegeneration research. At HDR UK we are extremely proud to demonstrate the readiness of researchers to work with high-quality datasets such as these and their value when made available in this way.

Both Data Pilots are supported by the Alzheimer’s Disease Data Initiative.

Brain Health Data Pilot

Existing dementia AI tools and models that predict the course of disease typically rely on small, selective cohorts that lack diversity. To address this limitation, we created the brain health data pilot as part of the Scottish Medical Imaging Initiative. Our ambition is to enable neurological research by linking 1.6million CT and MRI scans from 831,000 individuals with national health records, while maintaining robust governance and privacy protections.

The pilot demonstrated that imaging analysis is possible within established trusted research environments, and delivers a useful imaging resource. We are now training a brain age model at population scale, evaluating its generalisability across genders, ethnic groups, and socioeconomic backgrounds. The goal is to build models that integrate CT and MRI images, clinical text, and linked electronic health records to test predictive performance across multiple neurodegenerative diseases.

The Dementia Trials Accelerator

The Dementia Trials Accelerator addresses challenges in clinical trial recruitment for Alzheimer’s disease. In partnership with the UK Dementia Research Institute (UK DRI) and founding partner Imperial College London, alongside a range of UK-wide data partners, we are using key UK research cohorts to identify and contact people to measure cognition and relevant blood biomarkers.

Trial recruitment is notoriously difficult for dementia studies because of delays in diagnosis, and difficulty measuring disease progression. In creating a platform with many pre-registered individuals who have already been screened, we can offer trialists and researchers the ability to contact potential participants with a clear understanding of their cognition and blood-based biomarkers, needed to identify the right participants for the right trials.

Recruitment of a cohort of approximately 10,000 participants will begin in the first quarter of 2026. A panel including participant representatives will review applications for studies with UK ethics approval. In this way, we hope to accelerate digitally enabled large-scale trials, capitalising on existing UK cohorts and community-based infrastructure.

The Dementia Trials Accelerator is supporting the government’s Dame Barbara Windsor Dementia Goals programme and is funded by the Medical Research Council (MRC).

Opportunities to connect at CTAD

The CTAD conference embodies the collaborative public and patient focused approach that HDR UK embraces. In sharing our projects at the conference, we hope to advance our shared vision of uniting health data to accelerate discoveries that improve lives affected by dementia.

If you are attending CTAD, please drop by our posters or contact us directly on the conference app to arrange a meeting, we’d love to engage with you.

Poster presentation schedule:

Artificial intelligence in AD clinical trials (Monday 1 December at 15:00 until 17:00 on Tuesday 2 December)

  • ‘Brain health data pilot: a national dataset of routine brain imaging for artificial intelligence and epidemiology’ (P146) presented by Professor William Whiteley

Digital health/E-trials (Thursday 4 December all day)

  • ‘Federated Data pilots for international collaboration in Alzheimer’s disease and dementia research’ (P403) presented by Dr Eoghan Forde
  • ‘Dementia Trials Accelerator: UK services for clinical trials in dementia and related disorders’ (P392) presented by Professor William Whiteley