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

Sanne Franzen; Karen Nuytemans; Renelle Bourdage; Paulo Caramelli; Ratnavalli Ellajosyula; Elizabeth Finger; Ignacio Illán-Gala; Samantha M. Loi; Darby Morhardt; Yolande Pijnenburg; Katya Rascovsky; Monique M. Williams; Jennifer S. Yokoyama; Suvarna Alladi; Yavuz Ayhan; Iris Broce; Sheila Castro-Suarez; Kristy Coleman; Leonardo Cruz de Souza; Penny A. Dacks; Sterre C.M. de Boer; Jessica de Leon; Shana Dodge; Stephanie Grasso; Veer Gupta; Vivek Gupta; Nupur Ghoshal; Vidyulata Kamath; Fiona Kumfor; Jordi A. Matias-Guiu; Pauline Narme; T. Rune Nielsen; Daniel Okhuevbie; Stefanie D. Piña-Escudero; Ramiro Ruiz Garcia; Marta Scarioni; Andrea Slachevsky; Aida Suarez-Gonzalez; Boon Lead Tee; Elena Tsoy; Hülya Ulugut; Ganesh M. Babulal; Chiadi U. Onyike

doi:10.1002/alz.13129

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

Sanne Franzen^*, Karen Nuytemans, Renelle Bourdage, Paulo Caramelli, Ratnavalli Ellajosyula, Elizabeth Finger, Ignacio Illán-Gala, Samantha M. Loi, Darby Morhardt, Yolande Pijnenburg, Katya Rascovsky, Monique M. Williams, Jennifer S. Yokoyama, Suvarna Alladi, Yavuz Ayhan, Iris Broce, Sheila Castro-Suarez, Kristy Coleman, Leonardo Cruz de Souza, Penny A. DacksSterre C.M. de Boer, Jessica de Leon, Shana Dodge, Stephanie Grasso, Veer Gupta, Vivek Gupta, Nupur Ghoshal, Vidyulata Kamath, Fiona Kumfor, Jordi A. Matias-Guiu, Pauline Narme, T. Rune Nielsen, Daniel Okhuevbie, Stefanie D. Piña-Escudero, Ramiro Ruiz Garcia, Marta Scarioni, Andrea Slachevsky, Aida Suarez-Gonzalez, Boon Lead Tee, Elena Tsoy, Hülya Ulugut, Ganesh M. Babulal, Chiadi U. Onyike

^*Corresponding author for this work

Mesulam Center for Cognitive Neurology and Alzheimers Disease

Research output: Contribution to journal › Article › peer-review

5 Scopus citations

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.

Original language	English (US)
Pages (from-to)	5817-5836
Number of pages	20
Journal	Alzheimer's and Dementia
Volume	19
Issue number	12
DOIs	https://doi.org/10.1002/alz.13129
State	Published - Dec 2023

Funding

Sanne Franzen is supported by ZonMW (#73305095007) and Health Holland, Topsector Life Sciences & Health (PPP-allowance; #LSHM20106). Renelle Bourdage is supported by the IDEX Fellowship. Ignacio Illán-Gala is supported with funding from GBHI, Alzheimer's Association, and Alzheimer's Society (GBHI ALZ UK-21-720973 and AACSF-21-850193), as well as by the Instituto de Salud Carlos III (JR20/0018 and PI21/00791). Darby Morhardt receives funding from NIH/NIA, HRSA, and a private foundation. Jennifer S. Yokoyama is supported by NIH-NIA R01 AG062588, R01 AG057234, P30 AG062422; NIH-NINDS U54 NS123985; the Rainwater Charitable Foundation; the Alzheimer's Association; the Global Brain Health Institute; and the Mary Oakley Foundation. Jessica de Leon is supported by NIDCD K23 DC018021. Fiona Kumfor is supported by the National Health and Medical Research Council Career Development Fellowship GNT1158762. Andrea Slachevsky is supported by ANID/FONDAP /ID15150012; ANID/FONDEF/ID22I10251; ANID/Fondecyt Regular/1210195 &1191726; ANID/PIA/Anillos ACT210096; Multi-Partner-Consortium to expand dementia research in Latin-America (ReDLat, supported by National Institutes of Health, National Institutes of Aging [R01 AG057234], Alzheimer's Association [SG-20-725707], Tau Consortium, and Global Brain Health Institute), and Alzheimer's Association GBHI ALZ UK-20-639295. Aida Suarez-Gonzalez is funded by a UKRI Healthy Ageing Challenge Catalyst Award (ES/W006405/1), the National Institute for Health Research (COV-LT2-0014), and a grant jointly funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK; ES/S010467/1). Elena Tsoy is supported by the Alzheimer's Association. Hülya Ulugut has received the Alzheimer's Association Clinician Scientist Fellowship (AACSF) grant (Re: AACSF-22-849085). Ganesh M. Babulal is supported by NIH/NIA: R01AG068183 (GMB), R01AG056466 (GMB), R01AG067428 (GMB), R01AG074302 (GMB), and BrightFocus Foundation A2021142S (GMB).

Keywords

cultural diversity
diagnosis
ethnicity
frontotemporal dementia
language
literacy
neuropsychological tests
primary progressive aphasia

ASJC Scopus subject areas

Epidemiology
Health Policy
Developmental Neuroscience
Clinical Neurology
Geriatrics and Gerontology
Cellular and Molecular Neuroscience
Psychiatry and Mental health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1002/alz.13129

Cite this

Franzen, S., Nuytemans, K., Bourdage, R., Caramelli, P., Ellajosyula, R., Finger, E., Illán-Gala, I., Loi, S. M., Morhardt, D., Pijnenburg, Y., Rascovsky, K., Williams, M. M., Yokoyama, J. S., Alladi, S., Ayhan, Y., Broce, I., Castro-Suarez, S., Coleman, K., de Souza, L. C., ... Onyike, C. U. (2023). Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research. Alzheimer's and Dementia, 19(12), 5817-5836. https://doi.org/10.1002/alz.13129

@article{25cca71aae33403cba66769896c2998b,

title = "Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research",

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",

author = "Sanne Franzen and Karen Nuytemans and Renelle Bourdage and Paulo Caramelli and Ratnavalli Ellajosyula and Elizabeth Finger and Ignacio Ill{\'a}n-Gala and Loi, {Samantha M.} and Darby Morhardt and Yolande Pijnenburg and Katya Rascovsky and Williams, {Monique M.} and Yokoyama, {Jennifer S.} and Suvarna Alladi and Yavuz Ayhan and Iris Broce and Sheila Castro-Suarez and Kristy Coleman and {de Souza}, {Leonardo Cruz} and Dacks, {Penny A.} and {de Boer}, {Sterre C.M.} and {de Leon}, Jessica and Shana Dodge and Stephanie Grasso and Veer Gupta and Vivek Gupta and Nupur Ghoshal and Vidyulata Kamath and Fiona Kumfor and Matias-Guiu, {Jordi A.} and Pauline Narme and Nielsen, {T. Rune} and Daniel Okhuevbie and Pi{\~n}a-Escudero, {Stefanie D.} and Garcia, {Ramiro Ruiz} and Marta Scarioni and Andrea Slachevsky and Aida Suarez-Gonzalez and Tee, {Boon Lead} and Elena Tsoy and H{\"u}lya Ulugut and Babulal, {Ganesh M.} and Onyike, {Chiadi U.}",

note = "Publisher Copyright: {\textcopyright} 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.",

year = "2023",

month = dec,

doi = "10.1002/alz.13129",

language = "English (US)",

volume = "19",

pages = "5817--5836",

journal = "Alzheimer's and Dementia",

issn = "1552-5260",

publisher = "Elsevier Inc.",

number = "12",

}

Franzen, S, Nuytemans, K, Bourdage, R, Caramelli, P, Ellajosyula, R, Finger, E, Illán-Gala, I, Loi, SM, Morhardt, D, Pijnenburg, Y, Rascovsky, K, Williams, MM, Yokoyama, JS, Alladi, S, Ayhan, Y, Broce, I, Castro-Suarez, S, Coleman, K, de Souza, LC, Dacks, PA, de Boer, SCM, de Leon, J, Dodge, S, Grasso, S, Gupta, V, Gupta, V, Ghoshal, N, Kamath, V, Kumfor, F, Matias-Guiu, JA, Narme, P, Nielsen, TR, Okhuevbie, D, Piña-Escudero, SD, Garcia, RR, Scarioni, M, Slachevsky, A, Suarez-Gonzalez, A, Tee, BL, Tsoy, E, Ulugut, H, Babulal, GM & Onyike, CU 2023, 'Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities–focused research', Alzheimer's and Dementia, vol. 19, no. 12, pp. 5817-5836. https://doi.org/10.1002/alz.13129

TY - JOUR

T1 - Gaps in clinical research in frontotemporal dementia

T2 - A call for diversity and disparities–focused research

AU - Franzen, Sanne

AU - Nuytemans, Karen

AU - Bourdage, Renelle

AU - Caramelli, Paulo

AU - Ellajosyula, Ratnavalli

AU - Finger, Elizabeth

AU - Illán-Gala, Ignacio

AU - Loi, Samantha M.

AU - Morhardt, Darby

AU - Pijnenburg, Yolande

AU - Rascovsky, Katya

AU - Williams, Monique M.

AU - Yokoyama, Jennifer S.

AU - Alladi, Suvarna

AU - Ayhan, Yavuz

AU - Broce, Iris

AU - Castro-Suarez, Sheila

AU - Coleman, Kristy

AU - de Souza, Leonardo Cruz

AU - Dacks, Penny A.

AU - de Boer, Sterre C.M.

AU - de Leon, Jessica

AU - Dodge, Shana

AU - Grasso, Stephanie

AU - Gupta, Veer

AU - Gupta, Vivek

AU - Ghoshal, Nupur

AU - Kamath, Vidyulata

AU - Kumfor, Fiona

AU - Matias-Guiu, Jordi A.

AU - Narme, Pauline

AU - Nielsen, T. Rune

AU - Okhuevbie, Daniel

AU - Piña-Escudero, Stefanie D.

AU - Garcia, Ramiro Ruiz

AU - Scarioni, Marta

AU - Slachevsky, Andrea

AU - Suarez-Gonzalez, Aida

AU - Tee, Boon Lead

AU - Tsoy, Elena

AU - Ulugut, Hülya

AU - Babulal, Ganesh M.

AU - Onyike, Chiadi U.

PY - 2023/12

Y1 - 2023/12

N2 - 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.

AB - 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.

KW - cultural diversity

KW - diagnosis

KW - ethnicity

KW - frontotemporal dementia

KW - language

KW - literacy

KW - neuropsychological tests

KW - primary progressive aphasia

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AN - SCOPUS:85161401501

SN - 1552-5260

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SP - 5817

EP - 5836

JO - Alzheimer's and Dementia

JF - Alzheimer's and Dementia

IS - 12

ER -

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

Abstract

Funding

Keywords

ASJC Scopus subject areas

UN SDGs

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