Recent regulatory approvals of disease-modifying therapies for Alzheimer’s and other neurodegenerative conditions demonstrate that slowing disease progression is now possible.

To capitalise on this opportunity and accelerate progress, the UK must make it easier and faster to generate clinical trial and real-world evidence on treatment clinical effectiveness, safety and patient outcomes. 

The Dame Barbara Windsor Dementia Goals Programme (DGP) sets out a roadmap to addressing these challenges. The Neurodegeneration Initiative is a purpose built, public private partnership, designed to act as a catalyst for the DGP, aligned to the UK Dementia Trials Network (UKDTN) and working in partnership with the Dementia Trials Accelerator (DTA).

The UK Government’s commitment to the goal of the Dame Barbara Windsor Dementia Goals programme has been evidenced by over £100M recent investments across the dementia research ecosystem and now with the establishment of the Neurodegeneration Initiative, which Government intends to co-invest in with other founding partners.

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:

Supporting the development of new technologies and approaches for biomarker detection and therapeutics

Accelerating and improving patient participation and inclusion rates in clinical trials

Creating a federated data platform that gives access to existing and new dementia data in the UK

How We Work

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

Scientific Advisory Board

Chaired by Dr Ruth McKernan, 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 both heard and addressed throughout our work.

System Partners Engagement Forum

Chaired by Raj Long, this forum works with System Partners to provide effective readiness and strategic guidance, and supports 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 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 data.
  • 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 cohorts (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.
  • Continuous learning loop: trial and treatment data flow back to refine diagnosis, recruitment, and safety monitoring.