A major new initiative has been launched in the UK, with plans for a national data platform to connect people to dementia research opportunities and clinical trials, helping to bring innovative treatments to patients.

982,000 people are estimated to be living with dementia in the UK, and this is expected to rise to 1.4 million by 2040.

The BARBARA Alliance aims to enable a new generation of precision dementia medicines and solutions for the UK by accelerating innovation in biomarkers, clinical trials, and data, thereby improving access to and adoption of innovative treatments and technologies.

It will bring together commercial life sciences companies, health foundations and charities, academia, and national health systems to accelerate progress in this crucial area of research.

Alongside the launch, the Alliance has published 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 in this space 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. 

This dynamic, nationwide virtual registry would connect existing research cohorts, NHS services and emerging biomarker technologies to identify and recruit participants for dementia clinical trials more quickly and equitably.

By linking discovery science, real-world data, trial recruitment, and regulatory evidence in one place, The BARBARA Alliance aims to enable wider, more rapid access to clinical trials and adoption of treatments and diagnostics – helping to provide better outcomes for people with dementia.

The BARBARA Alliance has evolved from the Neurodegeneration Initiative, which Medicines Discovery Catapult (MDC) was appointed to establish through the UK Government’s Dame Barbara Windsor Dementia Goals Programme. MDC will continue to support The Alliance as part of its Scientific Advisory Board.

Lord Bethell, former Parliamentary minister for Innovation at the Department of Health and Social Care, is Chair of The BARBARA Alliance. Commenting on the launch of the initiative, he said:

“The science to beat dementia is already out there waiting to be validated in clinical trials. 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.”

 Dr Mike Strange, Interim CEO of Medicines Discovery Catapult, said: 

“Medicines Discovery Catapult is proud to have supported The BARBARA Alliance from its inception as the Neurodegeneration Initiative to its 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.” 

Dr Sara Imarisio, Strategy Lead for Neuroscience at Medicines Discovery Catapult and Science Lead for The BARBARA Alliance, added:

“One of the greatest challenges in dementia research is connecting the right people to the right studies at the right time. By improving how participants are identified and recruited, we can help researchers generate evidence more quickly and accelerate the development of innovative diagnostics and treatments for people affected by dementia.”

 For more information, please visit The Barbara Alliance website >