UK Dementia Trials Network: an expert‐informed framework for improving representation in dementia trials
23 affiliations
- 1Department of Neurodegenerative Diseases Institute of Neurology University College London Queen Square, London UK
- 2Medical & Scientific Relations Alzheimer's Association Chicago Illinois USA
- 3Division of Neuroscience School of Medicine and Population Health Sheffield Institute for Translational Neuroscience (SITRaN), The University of Sheffield Sheffield UK
- 4Department of Neurology Massachusetts General Hospital, Harvard Medical School Boston Massachusetts USA
- 5Melbourne School of Psychological Sciences University of Melbourne Melbourne Victoria Australia
- 6Penn Neurodegeneration Genomics Center Department of Pathology and Laboratory Medicine University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA
- 7Roche Products Ltd Welwyn Garden City UK
- 8Rare Dementia Support Centre, Institute of Neurology University College London, Queen Square London UK
- 9Eli Lilly and Company Indianapolis Indiana USA
- 10Global Alzheimer's Platform Foundation Washington District of Columbia USA
- 11Wessex Neurological Centre University Hospital Southampton NHS Foundation Trust Southampton UK
- 12Alzheimer's Research UK Cambridge UK
- 13Washington University in St. Louis St. Louis Missouri USA
- 14Department of Brain Sciences Imperial College London London UK
- 15Centre for Preventive Neurology Wolfson Institute of Population Health, Queen Mary University of London London UK
- 16Department of Neurology Barts Health NHS Trust London UK
- 17Atsena Therapeutics Durham North Carolina USA
- 18Alzheimer's Society London UK
- 19Alzheimer's Therapeutic Research Institute University of Southern California San Diego California USA
- 20Bristol Myers Squibb New York New York USA
- 21Biogen Inc Cambridge Massachusetts USA
- 22Denali Therapeutics South San Francisco California USA
- 23Dementia Research Centre, Institute of Neurology University College London Queen Square, London UK
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.
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BibTeX
@article{fontana2026dementia,
title = {{UK Dementia Trials Network: an expert‐informed framework for improving representation in dementia trials}},
author = {Igor C. Fontana and Tara Comber and Sheena Aurora and Daniel J Blackburn and Rachel F. Buckley and Christine Chow and Tiffany W. Chow and Ruth Croney and Sebastian J. Crutch and Karen Chilcott Holdridge and Lynne Hughes and Christopher Kipps and Susan Kohlhaas and Jorge Llibre‐Guerra and Paresh Malhotra and Charles R. Marshall and Stella McCaughey and Richard James Oakley and Rema Raman and Daniel Ridley and Shardae Showell and Richard Tsai and Catherine J. Mummery},
journal = {Alzheimer's \& Dementia},
year = {2026},
month = oct,
doi = {10.1002/alz.71928},
url = {https://doi.org/10.1002/alz.71928},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - UK Dementia Trials Network: an expert‐informed framework for improving representation in dementia trials
AU - Igor C. Fontana
AU - Tara Comber
AU - Sheena Aurora
AU - Daniel J Blackburn
AU - Rachel F. Buckley
AU - Christine Chow
AU - Tiffany W. Chow
AU - Ruth Croney
AU - Sebastian J. Crutch
AU - Karen Chilcott Holdridge
AU - Lynne Hughes
AU - Christopher Kipps
AU - Susan Kohlhaas
AU - Jorge Llibre‐Guerra
AU - Paresh Malhotra
AU - Charles R. Marshall
AU - Stella McCaughey
AU - Richard James Oakley
AU - Rema Raman
AU - Daniel Ridley
AU - Shardae Showell
AU - Richard Tsai
AU - Catherine J. Mummery
PY - 2026
DA - 2026/10/01
JO - Alzheimer's & Dementia
DO - 10.1002/alz.71928
UR - https://doi.org/10.1002/alz.71928
AB - 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.
SN - 1552-5260
SN - 1552-5279
ER -