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A nationwide “virtual registry” of people living with dementia has been launched with the aim of speeding up the discovery of new treatments, with financial backing from the UK government, philanthropic foundations and the pharmaceutical industry.
The platform will bring together 180 existing research databases or population health studies in order to improve access to clinical trials, while boosting the UK as a destination for life sciences investment.
It has been named BARBARA — the Brain Ageing Registry for Biomarkers, Access to trials, Research and Adoption — in memory of the actress Dame Barbara Windsor who died with Alzheimer’s disease in 2020.
This will be “the world’s best register of dementia data for companies that want to test their treatments”, said James Bethell, former innovation minister at the Department of Health and Social Care in Boris Johnson’s government, who is chairing the initiative. It would also offer people living with, or at risk from, the condition a better chance of participating in the search for effective medicines, he added.
Around the world, 158 treatments for Alzheimer’s disease are being tested across 192 clinical trials, with additional new potential drugs in development for non-Alzheimer’s dementias.
Yet Bethell said between 2024 and 2025, only 173 people with Alzheimer’s had participated in late-stage, commercially sponsored trials in England, which he called a “terrifyingly” low number.
The hope is that with a pre-screened and accessible source of potential trial participants, and the development of blood biomarkers that could identify the condition before symptoms appear, it might be possible to enrol people in studies “with a very early diagnosis or even pre-diagnosis”.
This could ultimately lead to a new roster of precision dementia therapies based on genetic analysis, Bethell argued.
The “great torture of doing clinical trials” is the difficulty of finding the right cohort of candidates on whom to test a drug, said Bethell. “A typical recruitment rate is about one in 10 with pretty good data.” If that could be doubled or better, “you completely change the economics of clinical trials”.
After what Bethell described as “a rough couple of years” for big pharma companies, BARBARA could tempt them to carry out their clinical trials and early-stage development in the UK.
This turbulence included difficult trade negotiations with the US over drug pricing, compounded by the decision of the National Institute for Health and Care Excellence (NICE) — currently under review — that two new Alzheimer’s drugs, lecanemab and donanemab, did not offer value for money.
While Bethell said he understood NICE’s initial ruling, it had created “a very negative reaction” in the global life sciences industry. BARBARA offered a chance to demonstrate the UK’s commitment to innovation, he suggested.
Arguing “a big revolution” was under way in dementia treatment, he predicted: “In five years’ time we’re going to have half a dozen really promising interventions”, ranging from medicines and vaccines to a better understanding of risk factors such as insufficient sleep.
“We really will be able to massively reduce the amount of dementia there is in society,” he said, easing pressure on the NHS and social care.
The precise sum to be invested in the platform is expected to be announced later this year.
Sally John, senior vice-president for Informatics and predictive sciences at Bristol Myers Squibb, said BARBARA “will help the Alzheimer’s field ask better questions and accelerate progress for patients in need”, generating unique data sets “that we can interrogate with advanced artificial intelligence and machine learning approaches”.
