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

Sanne Franzen¹, Karen Nuytemans², Renelle Bourdage^{1

3}, Paulo Caramelli⁴, Ratnavalli Ellajosyula^{5

6}, Elizabeth Finger^{7

8

9}, Ignacio Illán-Gala^{10

11}, Samantha M Loi^{12

13}, Darby Morhardt¹⁴, Yolande Pijnenburg^{15

16}, Katya Rascovsky¹⁷, Monique M Williams¹⁸, Jennifer S Yokoyama^{19

20}, Suvarna Alladi²¹, Yavuz Ayhan²², Iris Broce^{19

23}, Sheila Castro-Suarez^{24

25}, Kristy Coleman⁷, Leonardo Cruz de Souza²⁶, Penny A Dacks²⁷, Sterre C M de Boer^{15

16}, Jessica de Leon¹⁹, Shana Dodge²⁷, Stephanie Grasso²⁸, Veer Gupta²⁹, Vivek Gupta³⁰, Nupur Ghoshal³¹, Vidyulata Kamath³², Fiona Kumfor³³, Jordi A Matias-Guiu³⁴, Pauline Narme³, T Rune Nielsen³⁵, Daniel Okhuevbie^{36

37}, Stefanie D Piña-Escudero^{19

25}, Ramiro Ruiz Garcia^{7

9

38}, Marta Scarioni^{15

39}, Andrea Slachevsky^{40

41

42

43}, Aida Suarez-Gonzalez⁴⁴, Boon Lead Tee^{19

25

45}, Elena Tsoy^{19

25}, Hülya Ulugut^{15

16

19}, Ganesh M Babulal^{46

47

48

49}, Chiadi U Onyike³²; ISTAART FTD PIA and ISTAART Diversity and Disparities PIA

Affiliations

¹ Department of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, the Netherlands.
² 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.
³ Laboratoire Mémoire Cerveau et Cognition (UR 7536), Institut de Psychologie, Université Paris Cité, Boulogne-Billancourt, France.
⁴ Behavioral and Cognitive Neurology Research Group, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte (MG), Brazil.
⁵ Manipal Hospitals, Bangalore and Annasawmy Mudaliar Hospital, Bangalore, India.
⁶ Manipal Academy of Higher Education (MAHE), Manipal, India.
⁷ Parkwood Institute Research, London, Ontario, Canada.
⁸ Robarts Research Institute, University of Western Ontario, London, Ontario, Canada.
⁹ Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, University of Western Ontario, London, Ontario, Canada.
¹⁰ 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.
¹¹ Centro de Investigación en Red-Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain.
¹² Neuropsychiatry, Royal Melbourne Hospital, Parkville, Victoria, Australia.
¹³ Department of Psychiatry, University of Melbourne, Parkville, Victoria, Australia.
¹⁴ Mesulam Center for Cognitive Neurology and Alzheimer's Disease and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
¹⁵ Alzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
¹⁶ Amsterdam Neuroscience, Neurodegeneration, Amsterdam, the Netherlands.
¹⁷ Department of Neurology and Penn Frontotemporal Degeneration Center, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
¹⁸ St. Louis Oak Street Health, St. Louis, Missouri, USA.
¹⁹ Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
²⁰ Department of Radiology and Biomedical Imaging, University of California, San Francisco, California, USA.
²¹ National Institute of Mental Health and Neurosciences, Bangalore, India.
²² Faculty of Medicine, Department of Psychiatry, Hacettepe University, Ankara, Turkey.
²³ Department of Neurosciences, University of California, San Diego, La Jolla, California, USA.
²⁴ CBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso, Instituto Nacional de Ciencias Neurológicas, Lima, Peru.
²⁵ Global Brain Health Institute, University of California San Francisco, San Francisco, California, USA and Trinity College, Dublin, Ireland.
²⁶ Department of Internal Medicine, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil.
²⁷ The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
²⁸ Speech, Language and Hearing Sciences, The University of Texas at Austin, Austin, Texas, USA.
²⁹ IMPACT-The Institute for Mental and Physical Health and Clinical Translation, School of Medicine, Deakin University, Geelong, Victoria, Australia.
³⁰ Macquarie Medical School, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia.
³¹ Departments of Neurology and Psychiatry, Knight Alzheimer Disease Research Center, Washington University School of Medicine, St. Louis, Missouri, USA.
³² Department of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
³³ Brain & Mind Centre and the School of Psychology, The University of Sydney, Sydney, New South Wales, Australia.
³⁴ Department of Neurology, Hospital Clinico San Carlos, San Carlos Institute for Health Research (IdiSSC), Universidad Complutense, Madrid, Spain.
³⁵ Danish Dementia Research Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Copenhagen, Denmark.
³⁶ Department of Cell Biology and Genetics, University of Lagos, Lagos, Nigeria.
³⁷ Department of Comparative Biosciences, University of Wisconsin-Madison, Madison, Wisconsin, USA.
³⁸ National Institute of Neurology and Neurosurgery, Mexico City, Mexico.
³⁹ Department of Neurology, Ghent University Hospital, Ghent, Belgium.
⁴⁰ Geroscience Center for Brain Health and Metabolism (GERO), Santiago, Chile.
⁴¹ Neuropsychology and Clinical Neuroscience Laboratory (LANNEC), Physiopathology Department - Intitute of Biomedical Sciences (ICBM), Neuroscience and East Neuroscience Departments, Faculty of Medicine, University of Chile, Santiago, Chile.
⁴² Memory and Neuropsychiatric Center (CMYN), Memory Unit, Neurology Department, Hospital del Salvador and Faculty of Medicine, University of Chile, Santiago, Chile.
⁴³ Servicio de Neurología, Departamento de Medicina, Clínica Alemana-Universidad del Desarrollo, Santiago, Chile.
⁴⁴ Dementia Research Centre, UCL Queen Square Institute of Neurology, University College London, London, UK.
⁴⁵ Department of Neurology, Dyslexia Center, University of California, San Francisco, California, USA.
⁴⁶ Department of Neurology, Washington University in St. Louis, St. Louis, Missouri, USA.
⁴⁷ Institute of Public Health, Washington University in St. Louis, St. Louis, Missouri, USA.
⁴⁸ Department of Psychology, Faculty of Humanities, University of Johannesburg, Johannesburg, South Africa.
⁴⁹ Department of Clinical Research and Leadership, The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia, USA.

PMID: 37270665
PMCID: PMC10693651
DOI: 10.1002/alz.13129

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

Sanne Franzen et al. Alzheimers Dement. 2023 Dec.

. 2023 Dec;19(12):5817-5836.

doi: 10.1002/alz.13129. Epub 2023 Jun 3.

Authors

Affiliations

¹ Department of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, the Netherlands.
² 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.
³ Laboratoire Mémoire Cerveau et Cognition (UR 7536), Institut de Psychologie, Université Paris Cité, Boulogne-Billancourt, France.
⁴ Behavioral and Cognitive Neurology Research Group, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte (MG), Brazil.
⁵ Manipal Hospitals, Bangalore and Annasawmy Mudaliar Hospital, Bangalore, India.
⁶ Manipal Academy of Higher Education (MAHE), Manipal, India.
⁷ Parkwood Institute Research, London, Ontario, Canada.
⁸ Robarts Research Institute, University of Western Ontario, London, Ontario, Canada.
⁹ Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, University of Western Ontario, London, Ontario, Canada.
¹⁰ 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.
¹¹ Centro de Investigación en Red-Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain.
¹² Neuropsychiatry, Royal Melbourne Hospital, Parkville, Victoria, Australia.
¹³ Department of Psychiatry, University of Melbourne, Parkville, Victoria, Australia.
¹⁴ Mesulam Center for Cognitive Neurology and Alzheimer's Disease and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
¹⁵ Alzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
¹⁶ Amsterdam Neuroscience, Neurodegeneration, Amsterdam, the Netherlands.
¹⁷ Department of Neurology and Penn Frontotemporal Degeneration Center, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
¹⁸ St. Louis Oak Street Health, St. Louis, Missouri, USA.
¹⁹ Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
²⁰ Department of Radiology and Biomedical Imaging, University of California, San Francisco, California, USA.
²¹ National Institute of Mental Health and Neurosciences, Bangalore, India.
²² Faculty of Medicine, Department of Psychiatry, Hacettepe University, Ankara, Turkey.
²³ Department of Neurosciences, University of California, San Diego, La Jolla, California, USA.
²⁴ CBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso, Instituto Nacional de Ciencias Neurológicas, Lima, Peru.
²⁵ Global Brain Health Institute, University of California San Francisco, San Francisco, California, USA and Trinity College, Dublin, Ireland.
²⁶ Department of Internal Medicine, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil.
²⁷ The Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
²⁸ Speech, Language and Hearing Sciences, The University of Texas at Austin, Austin, Texas, USA.
²⁹ IMPACT-The Institute for Mental and Physical Health and Clinical Translation, School of Medicine, Deakin University, Geelong, Victoria, Australia.
³⁰ Macquarie Medical School, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia.
³¹ Departments of Neurology and Psychiatry, Knight Alzheimer Disease Research Center, Washington University School of Medicine, St. Louis, Missouri, USA.
³² Department of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
³³ Brain & Mind Centre and the School of Psychology, The University of Sydney, Sydney, New South Wales, Australia.
³⁴ Department of Neurology, Hospital Clinico San Carlos, San Carlos Institute for Health Research (IdiSSC), Universidad Complutense, Madrid, Spain.
³⁵ Danish Dementia Research Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Copenhagen, Denmark.
³⁶ Department of Cell Biology and Genetics, University of Lagos, Lagos, Nigeria.
³⁷ Department of Comparative Biosciences, University of Wisconsin-Madison, Madison, Wisconsin, USA.
³⁸ National Institute of Neurology and Neurosurgery, Mexico City, Mexico.
³⁹ Department of Neurology, Ghent University Hospital, Ghent, Belgium.
⁴⁰ Geroscience Center for Brain Health and Metabolism (GERO), Santiago, Chile.
⁴¹ Neuropsychology and Clinical Neuroscience Laboratory (LANNEC), Physiopathology Department - Intitute of Biomedical Sciences (ICBM), Neuroscience and East Neuroscience Departments, Faculty of Medicine, University of Chile, Santiago, Chile.
⁴² Memory and Neuropsychiatric Center (CMYN), Memory Unit, Neurology Department, Hospital del Salvador and Faculty of Medicine, University of Chile, Santiago, Chile.
⁴³ Servicio de Neurología, Departamento de Medicina, Clínica Alemana-Universidad del Desarrollo, Santiago, Chile.
⁴⁴ Dementia Research Centre, UCL Queen Square Institute of Neurology, University College London, London, UK.
⁴⁵ Department of Neurology, Dyslexia Center, University of California, San Francisco, California, USA.
⁴⁶ Department of Neurology, Washington University in St. Louis, St. Louis, Missouri, USA.
⁴⁷ Institute of Public Health, Washington University in St. Louis, St. Louis, Missouri, USA.
⁴⁸ Department of Psychology, Faculty of Humanities, University of Johannesburg, Johannesburg, South Africa.
⁴⁹ Department of Clinical Research and Leadership, The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia, USA.

PMID: 37270665
PMCID: PMC10693651
DOI: 10.1002/alz.13129

Abstract

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.

Keywords: cultural diversity; diagnosis; ethnicity; frontotemporal dementia; language; literacy; neuropsychological tests; primary progressive aphasia.

PubMed Disclaimer

Conflict of interest statement

S.F. has received consulting fees from Biogen (paid to her organization) unrelated to this manuscript. All other authors report no conflicts of interest.

References

1. 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. - DOI - PMC - PubMed
1. Gorno-Tempini ML, Hillis AE, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology. 2011;76(11):1006–1014. doi:10.1212/WNL.0b013e31821103e6. - DOI - PMC - PubMed
1. Poole ML, Brodtmann A, Darby D, Vogel AP. Motor Speech Phenotypes of Frontotemporal Dementia, Primary Progressive Aphasia, and Progressive Apraxia of Speech. J Speech Lang Hear Res. 2017;60(4):897–911. doi:10.1044/2016_jslhr-s-16-0140. - DOI - PubMed
1. Onyike CU, Shinagawa S, Ellajosyula R. Frontotemporal Dementia: A cross-cultural perspective. Adv Exp Med Biol. 2021;1281:141–150. doi:10.1007/978-3-030-51140-1_10. - DOI - PubMed
1. UNESCO. Investing in Cultural Diversity and Intercultural Dialogue. UNESCO Publishing. unesdoc.unesco.org/ark:/48223/pf0000185202/PDF/185202eng.pdf.multi. Published 2009. Updated 2009. Accessed May 24, 2022.

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous