A Digital Pipeline for Dementia Trials
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. By consolidating 180 existing research databases, the initiative aims to improve access to clinical trials and boost the UK as a destination for life sciences investment.
Honoring a Legacy Through Data
Named for actress Dame Barbara Windsor, who died with Alzheimer’s in 2020, the Brain Ageing Registry for Biomarkers, Access to trials, Research and Adoption (BARBARA) is chaired by James Bethell, former innovation minister at the Department of Health and Social Care in Boris Johnson’s government. The platform provides a pre-screened and accessible source of potential trial participants.
The stakes are high. Bethell pointed to a “terrifyingly” low participation rate for the 2024–2025 period, noting that only 173 people in England took part in late-stage, commercially sponsored Alzheimer’s trials. The registry aims to improve these rates, as Bethell noted that if a typical recruitment rate of about one in 10 could be doubled or better, “you completely change the economics of clinical trials”.
Precision Medicine via Machine Learning
The platform’s reach extends into the future of precision medicine. By utilizing blood biomarkers to detect conditions before symptoms appear, BARBARA is designed to enable enrolment in studies “with a very early diagnosis or even pre-diagnosis”.
“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,” said Sally John, senior vice-president for Informatics and predictive sciences at Bristol Myers Squibb. This data-driven strategy supports the development of precision dementia therapies based on genetic analysis.
Navigating Regulatory Turbulence
The launch comes at a fragile moment for the UK’s pharmaceutical landscape. The industry has recently weathered significant friction, including difficult trade negotiations with the US over drug pricing and a ruling by the National Institute for Health and Care Excellence (NICE) that deemed the Alzheimer’s drugs lecanemab and donanemab did not offer value for money.
While that ruling remains under review, Bethell acknowledged it triggered a “very negative reaction” across the global life sciences community. BARBARA is intended to demonstrate the UK’s commitment to innovation, aiming to streamline the “great torture of doing clinical trials”—the difficulty of finding the right cohort of candidates—and tempt companies to carry out their clinical trials and early-stage development in the UK.
Scaling Global Research Efforts
The global landscape is crowded, with 158 treatments for Alzheimer’s disease currently undergoing testing across 192 clinical trials. Proponents argue that by successfully identifying the right patient cohorts, BARBARA will make the UK a destination for life sciences investment.
While the precise sum to be invested in the platform is expected to be announced later this year, the project serves a long-term goal. Bethell predicted that within five years, the medical community will have access to half a dozen promising interventions—ranging from medicines and vaccines to a better understanding of risk factors such as insufficient sleep—that could eventually reduce the amount of dementia in society and ease pressure on the NHS and social care.
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