Improving diagnosis and treatment for dementia and neurodegenerative conditions is a top priority for the National Institute for Health and Care Research (NIHR) and the Department of Health and Social Care (DHSC). The NIHR will build capacity and expertise in early phase dementia trials across the UK through an expanded NIHR Dementia Translational Research Collaboration, developing a Trials Network (D-TRC-TN).
This will offer people with dementia the opportunity to take part in early phase clinical trials irrespective of where they live and widen access to a larger, more diverse population. This network will work together with the Dame Barbara Windsor Dementia Mission, launched by former Prime Minister Boris Johnson in August 2022, to enhance trials conduct and increase the number and speed of clinical trials in dementia.
NIHR funding – split over five years – will be granted to University College London Hospitals NHS Foundation Trust (UCLH) who will host and coordinate the Trials Network. There will be an open, transparent process to select sites during the programme. The coordinating centre will invite applications for membership of the D-TRC-TN and build capacity and expertise at each member site to optimise function.
The initial phase of the programme will focus on improving processes required to conduct dementia trials in a number of sites, enhancing speed and delivery. Over time, the number of sites will expand and the network community will develop, ensuring people with dementia will be able to take part in early phase clinical trials across the country.
The D-TRC-TN will work closely with industry partners and the wider dementia and neurodegeneration ecosystem. The D-TRC-TN will have four key aims:
- Accelerating set up and regulatory processes for dementia studies
- Increasing industry engagement for early phase dementia trials
- Embedding patient support: enhancing recruitment, support and diversity within the D-TRC-TN and the research it supports
- Increasing capacity and expertise for early phase dementia trials, thus enhancing the number of people with dementia in the UK who can participate
UCLH Consultant Neurologist Dr Catherine Mummery is a dementia researcher at the NIHR Biomedical Research Centre at UCLH, Head of Clinical Trials at UCL’s Dementia Research Centre and Chair of the NIHR Dementia Translational Research Collaboration (TRC). She will lead on launching and delivering this new trial network alongside the Deputy Chairs of the NIHR Dementia TRC, Dr Vanessa Raymont, Senior Clinical Researcher at University of Oxford and Oxford Health NHS Foundation Trust R&D director , and Professor John-Paul Taylor, Professor of Translational Dementia Research at Newcastle University.
Dr Catherine Mummery said: “I am honoured to be leading this important and timely initiative, which recognises we are at a historic point in dementia research with disease modifying therapies emerging. We must seize momentum, working across the UK with partners such as the Mission and industry, world class researchers, and patient representatives to build expertise, capacity, and support in a unified network of trials sites. This will accelerate therapy development for dementia, enable participation for all regardless of location or demographic, and reframe the UK as the ‘go-to’ place for gold standard conduct of early phase trials. By doing so, we will improve care for all people with dementia.”
Dr Vanessa Raymont said: “I am delighted to be part of this collaborative trials network as it aims to improve dementia clinical trial access and capacity, especially as it will work with sites across the UK and with other existing UK networks and infrastructure.”
Helen Whately, Minister for Care and Mental Health said: “A dementia diagnosis is life-changing for patients and their loved ones. Early diagnosis of dementia is vital so people can get support to help them live with the disease and keep independent for as long as possible. “This funding will help increase the number of clinical trials and the range of participants. That means more and better research to identify new tests and treatments and improve our understanding of this cruel disease.”
Professor Lucy Chappell, Chief Executive of the NIHR, said: “We are making a substantial investment in this Dementia Trials Network, so that we can accelerate opportunities for new treatments for patients across the country. We know the impact that this can have for people living with the disease. This ambitious Trials Network will help extend life-changing access to dementia research and make a huge contribution to our scientific understanding of this disease.”
UCLH Chief Executive David Probert said: “UCLH is delighted and excited to be hosting and co-ordinating the Trials Network. I know our experienced dementia research teams look forward to working with our colleagues across the UK to widen access and help build capacity and capability for dementia trials.”
David Thomas, Head of Policy at Alzheimer’s Research UK, said: “The first generation of dementia treatments are now on the horizon, but their effects are modest. To really shift the dial on dementia, we’ll need a broader range of treatments, so we can target the diseases that cause it from multiple angles. Clinical trials allow people with dementia to take part in research to accelerate the arrival of these next-generation therapies. To make sure UK patients benefit, it’s vital that the country is an attractive place to carry out clinical research, and this new investment puts us on the right track. We’ve seen how a similar approach in other disease areas, such as cancer, has sped up the development of much-needed new treatments, while attracting investment in the UK economy. At Alzheimer’s Research UK, accelerating clinical research is a central part of our strategy for a cure for the diseases that cause dementia. We look forward to working closely with Dr Mummery and D-TRC to make this shared ambition a reality.”
Dr Richard Oakley, Assistant Director of Research and Innovation at Alzheimer’s Society, said: “One in three people born today will develop dementia. But of over 2,000 clinical trials run in the UK in 2022, only 28 focused on finding new dementia treatments. For too long, there have been staggeringly low numbers of participants in dementia trials. We need to improve the diversity of trial participants and address barriers to getting involved in research – like how far someone lives from a clinical trial site. That’s why we’re launching a brand-new programme to get nurses on the ground recruiting people from as many different communities and backgrounds as we can into clinical trials, providing support throughout their research journey. It’s brilliant to be able to do this in collaboration with the NIHR as they make their commitment today to boost clinical trials in the UK. With the emergence of the first treatments which can slow down Alzheimer’s disease, it is more vital than ever to invest in dementia research and get as many people involved as possible.”
Andrew, 69, from Brighton is part of the Alzheimer Society’s Research Participation Steering Group and is living with early onset dementia. He said: “It’s great news that there will be a substantial investment into clinical trials. I haven’t been able to take part in clinical trials yet, but my consultant is trying to get me onto one, and news like this gives me hope. I have taken part in research with universities, and I’ve got a lot out of it. I’ve enjoyed getting involved and meeting other people including those carrying out the research. It has helped to raise my own awareness of my condition and, hopefully, what has been learned will be of use for other people living with dementia.”
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Published: 24 January 2024