Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities-focused research.

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

Volume: 19

Issue: 12

Year of Publication: 2023

Affiliated Institutions:  Department of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, the Netherlands. John P. Hussman Institute for Human Genomics and Dr. John T. Macdonald Department of Human Genetics, University of Miami, Miller School of Medicine, Miami, Florida, USA. Behavioral and Cognitive Neurology Research Group, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte (MG), Brazil. Manipal Hospitals, Bangalore and Annasawmy Mudaliar Hospital, Bangalore, India. Parkwood Institute Research, London, Ontario, Canada. 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. Neuropsychiatry, Royal Melbourne Hospital, Parkville, Victoria, Australia. Mesulam Center for Cognitive Neurology and Alzheimer's Disease and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA. Alzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands. Department of Neurology and Penn Frontotemporal Degeneration Center, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA. St. Louis Oak Street Health, St. Louis, Missouri, USA. Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA. National Institute of Mental Health and Neurosciences, Bangalore, India. Faculty of Medicine, Department of Psychiatry, Hacettepe University, Ankara, Turkey. CBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso, Instituto Nacional de Ciencias Neurológicas, Lima, Peru. Department of Internal Medicine, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil. The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA. Speech, Language and Hearing Sciences, The University of Texas at Austin, Austin, Texas, USA. IMPACT-The Institute for Mental and Physical Health and Clinical Translation, School of Medicine, Deakin University, Geelong, Victoria, Australia. Macquarie Medical School, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia. Departments of Neurology and Psychiatry, Knight Alzheimer Disease Research Center, Washington University School of Medicine, St. Louis, Missouri, USA. Department of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA. Brain & Mind Centre and the School of Psychology, The University of Sydney, Sydney, New South Wales, Australia. Department of Neurology, Hospital Clinico San Carlos, San Carlos Institute for Health Research (IdiSSC), Universidad Complutense, Madrid, Spain. Laboratoire Mémoire Cerveau et Cognition (UR ), Institut de Psychologie, Université Paris Cité, Boulogne-Billancourt, France. Danish Dementia Research Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Copenhagen, Denmark. Department of Cell Biology and Genetics, University of Lagos, Lagos, Nigeria. Geroscience Center for Brain Health and Metabolism (GERO), Santiago, Chile. Dementia Research Centre, UCL Queen Square Institute of Neurology, University College London, London, UK. Department of Neurology, Washington University in St. Louis, St. Louis, Missouri, USA.

Abstract summary 

Frontotemporal dementia (FTD) is one of the leading causes of dementia before age 65 and often manifests as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). FTD's exact clinical presentation varies by culture, language, education, social norms, and other socioeconomic factors; current research and clinical practice, however, is mainly based on studies conducted in North America and Western Europe. Changes in diagnostic criteria and procedures as well as new or adapted cognitive tests are likely needed to take into consideration global diversity. This perspective paper by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment examines how increasing global diversity impacts the clinical presentation, screening, assessment, and diagnosis of FTD and its treatment and care. It subsequently provides recommendations to address immediate needs to advance global FTD research and clinical practice.

Authors & Co-authors:  Franzen Sanne S Nuytemans Karen K Bourdage Renelle R Caramelli Paulo P Ellajosyula Ratnavalli R Finger Elizabeth E Illán-Gala Ignacio I Loi Samantha M SM Morhardt Darby D Pijnenburg Yolande Y Rascovsky Katya K Williams Monique M MM Yokoyama Jennifer S JS Alladi Suvarna S Ayhan Yavuz Y Broce Iris I Castro-Suarez Sheila S Coleman Kristy K de Souza Leonardo Cruz LC Dacks Penny A PA de Boer Sterre C M SCM de Leon Jessica J Dodge Shana S Grasso Stephanie S Gupta Veer V Gupta Vivek V Ghoshal Nupur N Kamath Vidyulata V Kumfor Fiona F Matias-Guiu Jordi A JA Narme Pauline P Nielsen T Rune TR Okhuevbie Daniel D Piña-Escudero Stefanie D SD Garcia Ramiro Ruiz RR Scarioni Marta M Slachevsky Andrea A Suarez-Gonzalez Aida A Tee Boon Lead BL Tsoy Elena E Ulugut Hülya H Babulal Ganesh M GM Onyike Chiadi U CU

Study Outcome 

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Statistics
Citations :  Rascovsky K, Hodges JR, Knopman D, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain. 2011;134(9):2456–2477. doi:10.1093/brain/awr179.
Authors :  44
Identifiers
Doi : 10.1002/alz.13129
SSN : 1552-5279
Study Population
Male,Female
Mesh Terms
Humans
Other Terms
cultural diversity;diagnosis;ethnicity;frontotemporal dementia;language;literacy;neuropsychological tests;primary progressive aphasia
Study Design
Cross Sectional Study
Study Approach
Country of Study
Publication Country
United States