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Alzheimer's & dementia : the journal of the Alzheimer's Association
Published

UK Dementia Trials Network: an expert-informed framework for improving representation in dementia trials

Authors

Igor C Fontana, Tara Comber, Sheena Aurora, Daniel J Blackburn, Rachel F Buckley, Christine Chow, Tiffany W Chow, Ruth Croney, Sebastian J Crutch, Karen Chilcott Holdridge, Lynne Hughes, Christopher Kipps, Susan Kohlhaas, Jorge Llibre-Guerra, Paresh Malhotra, Charles R Marshall, Stella McCaughey, Richard James Oakley, Rema Raman, Daniel Ridley, Shardae Showell, Richard Tsai, Catherine J Mummery

Abstract

Alzheimers Dement. 2026 Oct;22(10):e71928. doi: 10.1002/alz.71928.

ABSTRACT

Alzheimer's disease (AD) is the leading cause of dementia worldwide, yet clinical trials remain unrepresentative of those most affected. Ethnic minoritized groups, socioeconomically deprived communities, adults over 75, and populations in low- and middle-income countries are consistently underrepresented, limiting generalizability and reinforcing health inequities. This white paper draws on an international roundtable on Diversity and Inclusion in Dementia Trials, convened by the UK Dementia Trials Network at the Alzheimer's Association International Conference 2025. We determined that key barriers to research participation included geographic distance, financial burden, restrictive eligibility criteria, invasive procedures, and limited study partner support. We also highlight gaps in ethnic diversity and the inadequate integration of sex and gender considerations in trial design and reporting. Improving representation in AD trials is both a scientific and moral imperative. Achieving this requires coordinated action across community engagement and trust building, data transparency and reporting, global trial access and capacity building, eligibility criteria reform, and financial and logistical support for participants. We propose an expert-informed implementation framework derived from the roundtable that identifies actionable strategies, responsible stakeholders, measurable indicators, and expected implementation outcomes to support translation of our recommendations into practice.

PMID:42928702 | PMC:PMC13696990 | DOI:10.1002/alz.71928

UK DRI Authors

Christine Chow

Neurogenetic Therapies Project Manager

Christine Chow

Prof Paresh Malhotra

Group Leader

Clinically active academic neurologist specialising in cognitive disorders and dementia

Prof Paresh Malhotra