The BARBARA Alliance, a major new initiative to improve dementia research, has launched today with the announcement of a new UK-wide platform to connect people and patients with clinical trials and accelerate discoveries in dementia research.
The launch of The BARBARA Alliance is backed by the publication of a report: Breaking Barriers: Enhancing Access to Dementia Clinical Trials in the UK which sets out a new roadmap for how the UK can become a global leader and attract research for new treatments.
The report recommends the creation of BARBARA – the Brain Ageing Registry for Biomarkers, Access to trials, Research and Adoption – a dynamic, nationwide virtual registry that would connect existing research cohorts, NHS services and emerging biomarker technologies to identify and recruit participants for dementia clinical trials more quickly and equitably and to help tackle the devastation of dementia in the UK and beyond.
The Dame Barbara Windsor Dementia Goals Programme was commissioned by the UK Government to accelerate the development and delivery of new dementia treatments. One of the tools developed to lay the foundations for this was the Neurodegeneration Initiative, driven and delivered by Medicines Discovery Catapult in partnership with stakeholders from across the Programme.
The initiative has evolved into The BARBARA Alliance, which brings together commercial Life Sciences companies, health foundations and charities, academia, and national health systems to accelerate progress in dementia research.
Globally, the Alzheimer’s disease (AD) “Circle of Hope” published pipeline (Jeffrey Cummings 2026) includes 158 treatments across 192 clinical trials, with additional new potential drugs in development for non-AD dementias. Yet the United Kingdom must contribute more to the translation of science into treatments for patients: between 2024 and 2025, only 173 individuals with Alzheimer’s dementia participated in late-stage, commercially sponsored trials in England.
Chaired by the former Parliamentary minister for Innovation at the Department of Health and Social Care, Lord James Bethell, The BARBARA Alliance aims to enable a new generation of precision dementia therapies and solutions for the UK by accelerating innovations in biomarkers, clinical trials and data to support access and implementation of innovative therapies and technologies.
“The science to beat dementia is already out there waiting to be validated in clinical trials,” said Lord Bethell.
“It is our mission to put that science to work by unblocking the barriers and creating the world’s best register of dementia data for companies that want to test their treatments.
“It’s a mission that has huge support amongst industry, academia and government,” he added.
One of the report’s lead authors and Chair of The BARBARA Alliance’s Scientific Advisory Board, Prof Ruth McKernan, explained the need for the BARBARA registry.
“With a diagnosis, you can find the right clinical trials for you. With clinical trials, you can develop new medicines and treatments. With evidence, new treatments can be adopted in the NHS. Until then, the biggest cause of death in the UK will remain poorly treated even though we know it is a modifiable disease.
“BARBARA, our flagship dynamic data platform, addresses the critical first step on the path to new treatments by improving and speeding up patient participation in clinical trials. Importantly, it provides hope for millions of people out there who know the pain and suffering of dementia.”
The recommendations come at a pivotal moment for dementia research, as advances in blood-based biomarkers and new Alzheimer’s treatments create unprecedented opportunities for earlier diagnosis and intervention.
But the advances are juxtaposed by a background in slow uptake in trial participants in the UK, with just 9% of all past and present interventional drug trials for dementia having taken place in the UK; only 342 out of 3706.
“In our Alzheimer’s Research UK surveys, the vast majority of people with memory concerns say they would like to take part in trials. But, only 173 individuals with Alzheimer’s dementia participated in late-stage, commercially sponsored trials in the United Kingdom in 2024/25 – this is despite a significant increase in the number of studies being done globally. ” says Hilary Evans-Newton, Chair of the Dame Barbara Windsor Dementia Goals Programme.
“Around 70% of people living with dementia are currently not accessing treatments or clinical trials. Barriers include fragmented services, inconsistent diagnosis pathways and under-representation of underserved communities” she added.
“This is not down to a lack of desire to participate or the huge scientific research talent which exists in the UK but is down to the ecosystem which exists and this is what The BARBARA Alliance seeks to address.”
The CEO of The BARBARA Alliance, Jessamy Baird MBE, said success in treatments for dementia would come from working together.
“Through BARBARA, we will be bringing together data from amazing research cohorts, the best scientific minds and research capabilities to realise our full potential across the UK and so lead the way in development of new treatments for these devastating conditions. Only by working together and in collaboration with our partners can we accelerate trials to get medicines to patients.”
BARBARA will provide a secure data platform linking existing registries and population health studies while connecting consented participants to future clinical trial opportunities.
“Our aim is to enable timely access to therapies for the wider population, reducing the pressure on health services whilst improving patient outcomes,” said the report’s co-author, Prof James Rowe.
“The BARBARA registry will streamline recruitment, support participation, and enable faster access to innovative therapies across the United Kingdom.”
Co-author on the publication, Professor Cath Mummery, Director of the NIHR-funded UK Dementia Trials Network, said:
“Recruitment of participants to global clinical trials depends upon the UK being able to work at pace across established research infrastructure, to identify participants with matching characteristic.
“This is a challenge for all trial delivery programmes. The BARBARA Alliance has great potential in helping support our research delivery networks.”
The BARBARA Alliance has been backed by the widower of the late Dame Barbara Windsor, Scott Mitchell.
Mr Mitchell who is People’s Champion of The Dame Barbara Windsor Dementia Goals Programme, said:
“Caring for Barbara really changed me. I saw things I wish I’d never seen and I feel for other people who are going through it.
“It’s one of the cruellest things that you will ever go through and that is why I am proud to be part of The BARBARA Alliance to unite the skills and talent we have in this country into finding treatments for these conditions.
“Babs would be proud of the work which is going on in her name; it’s a wonderful legacy.”
Medicines Discovery Catapult will continue to support The BARBARA Alliance as part of its Scientific Advisory Board. Dr Mike Strange, Interim CEO of the Medicines Discovery Catapult, said:
“Medicines Discovery Catapult is proud to have supported The BARBARA Alliance from its inception as the Neurodegeneration Initiative to today’s launch, working in close collaboration with the life science sector to lay vital foundations to help bring a transformative approach to dementia R&D.
“Dementia is a devastating disease that affects millions of people and better access to vital dementia clinical trials means that discoveries can be accelerated and patient lives improved.”
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Notes to editors
About The BARBARA Alliance
The BARBARA Alliance is a globally unique, not-for-profit, Life Sciences industry and health foundation led public-private partnership with charitable status, that will work together across government, industry, academia, the NHS and third sector, and will deliver the Dementia Goals programme objectives around developing innovations in biomarkers, data and digital sciences, increasing the number and speed of clinical trials in dementia and neurodegeneration and supporting the regulators and health system on implementation.
This will enable faster set-up and running of clinical trials to ensure more new treatments are developed and made available to patients sooner than otherwise. More information can be found on The BARBARA Alliance website: www.thebarbaraalliance.com
The full paper can be found at: Breaking barriers: Enhancing access to dementia clinical trials in the United Kingdom—Insights from the Scientific Advisory Board of the Dame Barbara Windsor Dementia Goals Programme – McKernan – 2026 – Alzheimer’s & Dementia – Wiley Online Library
Information on the number of participants on Phase 3 NIHR supported trials can be found at: Written questions and answers – Written questions, answers and statements – UK Parliament
The full paper on the Alzheimer’s disease drug development pipeline can be found at: Alzheimer’s disease drug development pipeline: 2026 – Cummings – 2026 – Alzheimer’s & Dementia: Translational Research & Clinical Interventions – Wiley Online Library