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

Karen Nuytemans*, Sanne Franzen, Iris J. Broce, Paulo Caramelli, Ratnavalli Ellajosyula, Elizabeth Finger, Veer Gupta, Vivek Gupta, Ignacio Illán-Gala, Samantha M. Loi, Darby Morhardt, Yolande Pijnenburg, Katya Rascovsky, Monique M. Williams, Jennifer S. Yokoyama, Juliana Acosta-Uribe, Rufus Akinyemi, Suvarna Alladi, Biniyam A. Ayele, Yavuz AyhanRenelle Bourdage, Sheila Castro-Suarez, Leonardo Cruz de Souza, Penny Dacks, Sterre C. M. de Boer, Jessica de Leon, Shana Dodge, Stephanie Grasso, Nupur Ghoshal, Vidyulata Kamath, Fiona Kumfor, Jordi A. Matias-Guiu, Pauline Narme, T. Rune Nielsen, Daniel Okhuevbie, Stefanie Piña-Escudero, Ramiro Ruiz-Garcia, Brigid Ryan, Marta Scarioni, Andrea Slachevsky, Aida Suarez-Gonzalez, Boon Lead Tee, Elena Tsoy, Hulya Ulugut, Chiadi U. Onyike, Ganesh M. Babulal, ISTAART Frontotemporal Dementia and Related Disorders PIA, ISTAART Diversity and Disparities PIA

*Corresponding author for this work

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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.

Original languageEnglish
Pages (from-to)9014-9036
Number of pages23
JournalAlzheimer's and Dementia
Volume20
Issue number12
DOIs
Publication statusPublished - Dec 2024

Bibliographical note

Copyright the Author(s) 2024. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

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

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