The Dementia Trials Accelerator (DTA), an initiative led by Health Data Research UK (HDR UK) and the UK Dementia Research Institute (UK DRI), takes a significant step forward in its mission to connect more people to clinical trials options by welcoming a group of key partners.
The collaboration introduces two of Scotland’s leading research cohorts – SHARE, which connects over 308,000 registered participants with medical researchers through targeted recruitment, and Generation Scotland, Scotland’s largest family health study with 40,000 volunteers providing rich longitudinal and genetic data.
They are joined by the NIHR BioResource, a national resource containing health, lifestyle and genetic information from over 350,000 volunteers, and Join Dementia Research, which has already built a community of volunteers who could potentially take part in dementia studies.
Central to enabling this expansion is the Health Informatics Centre at the University of Dundee. Their internationally recognised expertise in mapping to the Observational Medical Outcomes Partnership (OMOP) Common Data Model provides the ability to rapidly standardise these different, complex health data to make it research-ready faster than ever before.
Professor Andrew Morris, Director of Health Data Research UK, said:
“Research is empowered by bringing people together. The Dementia Trials Accelerator is harnessing regional expertise across the UK, enabling rapid data standardisation and supporting accessible pre-screening. This will help researchers start trials faster, ensure studies reflect diverse communities and get promising treatments to patients sooner.”
Professor Siddharthan Chandran, Director of the UK Dementia Research Institute, said:
“We’re pleased to welcome these new partners on board, each of which brings vital expertise and data that will be integral to the success of the Dementia Trials Accelerator. By working together, we can reduce barriers to clinical trials and ensure those affected by or at risk of dementia have the chance to take part in potentially life-changing research.”
While better data capabilities and research options are essential, ensuring people feel supported is equally important. Alzheimer’s Society joins the programme as a vital source of support for people affected by dementia and will provide practical advice, emotional support and guidance for anyone worried about dementia throughout their DTA journey.
By bringing together these established research data partners, data expertise and support networks with the existing recruitment services and REACT cohort, the DTA is building a powerful, inclusive system for dementia research across the UK.
Professor Colin Palmer, Director of The Scottish Health Research Register (SHARE), said:
“SHARE are very happy to support the DTA as this is a key initiative to enable the access of over 300,000 individuals in Scotland to participate in and contribute to vital dementia fighting research. This is the central purpose of SHARE to bring researchers and the public together to tackle today’s biggest health problems.”
Professor Riccardo E Marioni, Co-Principal Investigator, Generation Scotland, said:
“Generation Scotland can now – through data linkage to health records – identify those who have subsequently been diagnosed with Alzheimer’s disease or other dementias. Combining this with information derived from blood samples taken 20 years ago, we can try to identify early markers for those who go on to receive disease diagnoses. This exciting project aims to explore novel protein measures, which may help improve the prediction and prevention of dementia.”
Professor Nathalie Kingston, Director of the NIHR BioResource, said:
“We are thrilled that the NIHR BioResource is collaborating with the Dementia Trials Accelerator. Our volunteers have contributed towards a rich genetic and health dataset that will provide essential information for dementia research. Combined with our ability to recontact our volunteers to take part in further research, we are well placed to enable dementia clinical trials to take place in the UK.”
Professor Paresh Malhotra, National Speciality Lead for Dementias and Neurodegeneration for the NIHR Research Delivery Network, Join Dementia Research, said:
“With more than 900,000 people in the UK living with dementia, it is vital that everyone has an opportunity to take part in clinical trials to help improve treatments for the condition. This collaboration will help researchers set up and carry out trials faster, bringing more opportunities for volunteers to take part in research and speeding up the evaluation of new therapies.”
Dr Christian Cole, Health Informatics Centre, University of Dundee said:
“Dementia is a growing health challenge as people live longer. At HIC in Dundee, our team is proud to contribute its expertise in making existing health datasets more accessible by using open standard data to break down barriers. This will help researchers run more efficient clinical trials in this vital area through the DTA.”
Professor Fiona Carragher, Chief Policy and Research Officer at Alzheimer’s Society, said:
“Dementia is the UK’s biggest killer and without enabling people to take part in research we cannot see progress towards new treatments, diagnostics and better care. We believe that everyone living with dementia deserves the chance to take part in life-changing research. As the UK’s leading dementia charity, we are delighted to support this important initiative. Alzheimer’s Society is here for everyone affected by dementia today and throughout their dementia journey.”
