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

• Published in: Alzheimer's & dementia Vol. 20; no. 12; pp. 9014 - 9036
• Main Authors: Nuytemans, Karen, Franzen, Sanne, Broce, Iris J., Caramelli, Paulo, Ellajosyula, Ratnavalli, Finger, Elizabeth, Gupta, Veer, Gupta, Vivek, Illán‐Gala, Ignacio, Loi, Samantha M., Morhardt, Darby, Pijnenburg, Yolande, Rascovsky, Katya, Williams, Monique M., Yokoyama, Jennifer S., Acosta‐Uribe, Juliana, Akinyemi, Rufus, Alladi, Suvarna, Ayele, Biniyam A., Ayhan, Yavuz, Bourdage, Renelle, Castro‐Suarez, Sheila, Souza, Leonardo Cruz, Dacks, Penny, Boer, Sterre C. M., Leon, Jessica, Dodge, Shana, Grasso, Stephanie, Ghoshal, Nupur, Kamath, Vidyulata, Kumfor, Fiona, Matias‐Guiu, Jordi A., Narme, Pauline, Nielsen, T. Rune, Okhuevbie, Daniel, Piña‐Escudero, Stefanie, Ruiz‐Garcia, Ramiro, Ryan, Brigid, Scarioni, Marta, Slachevsky, Andrea, Suarez‐Gonzalez, Aida, Tee, Boon Lead, Tsoy, Elena, Ulugut, Hulya, Onyike, Chiadi U., Babulal, Ganesh M.
• Format: Journal Article
• Language: English
• Published: United States John Wiley and Sons Inc 01.12.2024
• Subjects: biomarkers; Biomedical Research; Cultural Diversity; epidemiology; ethnicity; frontotemporal dementia; Frontotemporal Dementia - diagnosis; Frontotemporal Dementia - genetics; Frontotemporal Dementia - therapy; genetics; Healthcare Disparities; Humans; infrastructure; epidemiology; genetics; ethnicity; biomarkers; cultural diversity; infrastructure; frontotemporal dementia
• ISSN: 1552-5260; 1552-5279; 1552-5279
• DOI: 10.1002/alz.14312

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.