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 £100m 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.

Acting as a national convenor to bring 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.

Our Flagship Programme: BARBARA

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

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.

Accelerated Recruitment and Increased Trial Activity and Participation

  • Pre-screened, biomarker-defined people suitable for research (e.g. pTau217 + digital cognition).
  • Broad demographics, recallability and re-contact consent.
  • Reduced screen-failure rates and faster enrolment for sponsors.

Enhance trial delivery and implementation

  • Early engagement with regulatory and health technology assessment authorities for biomarker use, companion diagnostics and clinical endpoints.
  • Supports adaptive licensing, regulatory use of real-world data, and post-market safety monitoring.
  • One ‘front door’ for commercial and non-commercial sponsors.

Real-World Data, Safety & HTA

  • Secure linkage of health records, registries, and digital tools.
  • Longitudinal monitoring of outcomes and treatment effectiveness.
  • Evidence to support regulatory submissions and health technology assessments which means a better chance of getting system approved access for people to treatments in the UK.
  • Continuous learning loop: trial and treatment data flow back to refine diagnosis, recruitment, and safety monitoring for future trials and treatments.