Gaps in biomedical research in frontotemporal dementia: A call for diversity and disparities focused research

Karen Nuytemans, John P. Hussman Institute for Human Genomics, University of Miami, Miller School of Medicine, Miami, Florida, USA.
Sanne Franzen, Department of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Iris J. Broce, Department of Neurosciences, University of California San Diego, La Jolla, California, USA.
Paulo Caramelli, Behavioral and Cognitive Neurology Unit, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
Ratnavalli Ellajosyula, Manipal Hospitals, Bangalore and Annasawmy Mudaliar Hospital, Bangalore, India.
Elizabeth Finger, Parkwood Institute Research, London, London, Ontario, Canada.
Veer Gupta, IMPACT-The Institute for Mental and Physical Health and Clinical Translation, School of Medicine, Deakin University, Waurn Ponds, Victoria, Australia.
Vivek Gupta, Macquarie Medical school, Faculty of Medicine, Health and Human Sciences, Macquarie University, Macquarie Park, New South Wales, Australia.
Ignacio Illán-Gala, Sant Pau Memory Unit, Department of Neurology, Hospital de la Santa Creu i Sant Pau, Biomedical Research Institute Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain.
Samantha M. Loi, Neuropsychiatry, Royal Melbourne Hospital, Parkville, Victoria, Australia.
Darby Morhardt, Mesulam Center for Cognitive Neurology and Alzheimer's Disease and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Yolande Pijnenburg, Alzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, North Holland, The Netherlands.
Katya Rascovsky, Department of Neurology and Penn Frontotemporal Degeneration Center, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Monique M. Williams, Oak Street Health - North City, St. Louis, Missouri, USA.
Jennifer S. Yokoyama, Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
Juliana Acosta-Uribe, Grupo de Neurociencias de Antioquia, Universidad de Antioquia, Medellín, Antioquia, Colombia.
Rufus Akinyemi, Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
Suvarna Alladi, Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, India.
Biniyam A. Ayele, John P. Hussman Institute for Human Genomics, University of Miami, Miller School of Medicine, Miami, Florida, USA.
Yavuz Ayhan, Institute of Neurological Sciences and Psychiatry, Hacettepe University, Sıhhiye/Altindag, Ankara, Turkey.
Renelle Bourdage, Department of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Sheila Castro-Suarez, CBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso, Instituto Nacional de Ciencias Neurológicas, Lima, Peru.
Leonardo Cruz de Souza, Behavioral and Cognitive Neurology Unit, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
Penny Dacks, The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
Sterre C. de Boer, Alzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, North Holland, The Netherlands.
Jessica de Leon, Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
Shana Dodge, The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
Stephanie Grasso, Speech, Language and Hearing Sciences, The University of Texas at Austin, Austin, Texas, USA.
Nupur Ghoshal, Depts. of Neurology and Psychiatry, Knight Alzheimer Disease Research Center, Washington University School of Medicine, Saint Louis, Missouri, USA.
Vidyulata Kamath, Department of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Fiona Kumfor, Brain & Mind Centre and the School of Psychology, The University of Sydney, Camperdown, New South Wales, Australia.
Jordi A. Matias-Guiu, Department of Neurology, Hospital Clinico San Carlos, San Carlos Institute for Health Research (IdiSSC), Universidad Complutense, Madrid, Spain.

Document Type

Journal Article

Publication Date

12-1-2024

Journal

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

Volume

20

Issue

12

DOI

10.1002/alz.14312

Keywords

biomarkers; cultural diversity; epidemiology; ethnicity; frontotemporal dementia; genetics; infrastructure

Abstract

Frontotemporal dementia (FTD) is one of the leading causes of young-onset dementia before age 65, typically manifesting as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). Although FTD affects all populations across the globe, knowledge regarding the pathophysiology and genetics derives primarily from studies conducted in North America and Western Europe. Globally, biomedical research for FTD is hindered by variable access to diagnosis, discussed in this group's earlier article, and by reduced access to expertise, funding, and infrastructure. This perspective paper was produced by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART) and discusses the field's current status on the cross-cultural aspects of basic and translational research in FTD (including that focused on epidemiology, genetics, biomarkers, and treatment). It subsequently provides a summary of gaps and needs to address the disparities and advance global FTD biomedical research.

Department

Neurology

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