We are at a turning point in dementia research.

For the first time, new treatments are showing that it may be possible to slow disease progression and actually modify the course of this terrible disease. Advances in diagnostics and data also mean we can better understand who is at risk and identify people with early disease sooner in their journey so they can take part in clinical research and gain the care interventions they need.

The UK Government has committed to putting Britain at the forefront of transforming treatments for dementia. The Dame Barbara Windsor Dementia Goals Programme was established in 2022 and has invested over £100 million across excellent initiatives such as the Blood Biomarker Challenge.

Thanks to this investment there are currently fantastic pockets of work across the UK. However, it remains fragmented.

The BARBARA Alliance is a not-for-profit organisation created to connect these strands, linking discovery science, real-world data, trial recruitment and regulatory level evidence in one place to enable wider and more rapid access to clinical trials, and quicker adoption of treatments and diagnostics.

The UK has the ingredients for success. The BARBARA Alliance brings them together to accelerate results.

Through extensive engagement with industry, academics, people living with dementia and those who care for them, we have identified core areas of focus to accelerate change.

Our core areas of focus:

Transforming research by connecting the UK’s datasets, cohorts and registries into a single platform.

Enabling more people to take part in clinical trials and providing a coordinated point of contact for researchers.

Bringing together academia, NHS, regulators, industry, health foundations and charities to ensure innovations reach patients faster.

How We Work

We are guided and supported by a diverse group of advisors representing the entire dementia ecosystem.

Scientific Steering Committee

Chaired by Dr Ruth McKernan, the Scientific Steering Committee (previously the Scientific Advisory Board) comprises leading experts in the fields of science, clinical care, and regulation. This group brings together global perspectives and expertise to inform and steer our research and development activities.

People’s Forum

Under the leadership of Scott Mitchell, husband of the late Dame Barbara Windsor, the People’s Forum plays a central role in our organisation. The forum ensures that the unmet needs of people living with dementia, as well as those who care for them, are at the centre of our work.

System Partners Engagement

We work and support Health System Partners, such as the MHRA and NHS systems across the UK, to provide effective readiness and strategic guidance, and support the implementation and adoption of new approaches and treatments for dementia diseases.

“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.”
Scott Mitchell, Chair of The BARBARA Alliances’ People’s Forum
“With dementia now the leading cause of death in UK and costing an estimated £42 billion every year, the UK must modernise its approach to diagnosis, trial recruitment and research infrastructure if patients are to benefit from the next generation of therapies,”
Lord Bethell, Chair of the BARBARA Alliance
“One of the key ways we will be addressing this is through BARBARA, bringing together data from amazing research cohorts across the UK to allow the scientific minds and research capabilities in the UK to realise their full potential and lead the way in bringing new treatments for these devastating conditions. Only by working together united across the UK and in collaboration with our partners can we accelerate trials to get medicines to patients”
Jessamy Baird MBE, CEO of The BARBARA Alliance
“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.”
Ruth McKernan, Chair of the Scientific Steering Committee

Our Flagship Programme: BARBARA

Brain Ageing Registry for Biomarkers, Access to trials, Research, and Adoption

See our latest publication

A single source of data and evidence gathered from multiple cohorts, trial infrastructure, biomarkers and real-world data to support the research community, patients, carers and the public.

  • Independent but Health System (e.g. NHS) aligned governance model.
  • Collates and connects existing registries and cohorts of participant data to support the research community with accelerating clinical trials.
  • Patient-centred, inclusive, culturally relevant, and co-designed with the People’s Forum.

 

Faster recruitment, broader participation

  • Pre-screened, biomarker-defined participants ready for research (e.g. pTau217+, digital cognitive markers).
  • Broad demographic reach, with recall and re-contact consent in place.
  • Lower screen-failure rates and faster enrolment for sponsors.

Enhanced outcome measures and implementation

  • Early engagement with regulators and HTA authorities on biomarker use, companion diagnostics, and clinical endpoints.
  • Supports adaptive licensing, regulatory use of real-world data, and post-market safety monitoring.
  • A single front door for commercial and non-commercial sponsors.

Real-world data, safety & HTA

  • Secure linkage of health records, registries, and digital tools for longitudinal outcome monitoring.
  • Evidence to strengthen regulatory submissions and HTA cases, improving the likelihood of system-approved access to treatment in the UK.
  • A continuous learning loop: trial and treatment data feedback to refine diagnosis, recruitment, and safety monitoring for future studies.