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

Sanne Franzen; Karen Nuytemans; the ISTAART FTD PIA and ISTAART Diversity and Disparities PIA; 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
, the ISTAART FTD PIA and ISTAART Diversity and Disparities PIA
, 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

^*Corresponding author for this work

Leonard M. Miller School of Medicine
Universidade Federal de Minas Gerais
Bangalore and Annasawmy Mudaliar Hospital
Manipal Academy of Higher Education
Parkwood Institute
Western University
Autonomous University of Barcelona
Instituto de Salud Carlos III
Royal Melbourne Hospital
University of Melbourne
Feinberg School of Medicine
Vrije Universiteit Amsterdam
Amsterdam UMC
UPenn School of Medicine
University of California at San Francisco
National Institute of Mental Health and Neurosciences
Hacettepe University
University of California at San Diego
Instituto Nacional de Ciencias Neurológicas
The Association for Frontotemporal Degeneration
University of Texas at Austin
Deakin University
Macquarie University
Washington University School of Medicine in St. Louis
Johns Hopkins School of Medicine
The University of Sydney
Complutense University
Université Paris Cité (Boulogne-Billancourt)
Rigshospitalet
University of Lagos
University of Wisconsin-Madison
Instituto Nacional de Neurologia y Neurocirugia
Ghent University Hospital
Geroscience Center for Brain Health and Metabolism (GERO)
Universidad de Chile
Universidad del Desarrollo
University College London
Washington University St. Louis
University of Johannesburg
George Washington University School of Medicine and Health Sciences
Louisiana State University

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

29 Citations (Scopus)

230 Downloads (Pure)

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
Pages (from-to)	5817-5836
Number of pages	20
Journal	Alzheimer's and Dementia
Volume	19
Issue number	12
Early online date	3 Jun 2023
DOIs	https://doi.org/10.1002/alz.13129
Publication status	Published - Dec 2023

Bibliographical note

Funding information: ZonMW, Grant/Award Number: 73305095007; Health Holland, Topsector Life Sciences & Health, Grant/Award Number: LSHM20106; GBHI, Alzheimer’s Association, and Alzheimer’s Society, Grant/Award Numbers: UK-21-720973, AACSF-21-850193; Instituto de Salud Carlos III, Grant/Award Numbers: JR20/0018, PI21/00791; NIH-NIA, Grant/Award Numbers: R01 AG062588, R01 AG057234, P30 AG062422, R01AG068183, R01AG056466, R01AG067428, R01AG074302; NIH-NINDS, Grant/Award Number: U54 NS123985; Rainwater Charitable Foundation; Global Brain Health Institute; Mary Oakley Foundation; NIDCD, Grant/Award Number: K23 DC018021; National Health and Medical Research Council Career Development Fellowship, Grant/Award Number: GNT1158762; ANID/FONDAP/ID15150012; ANID/FONDEF/ID22I10251; ANID/Fondecyt Regular/1210195 & 1191726; ANID/PIA/Anillos, Grant/Award Number: ACT210096; National Institutes of Health, National Institutes of Aging, Grant/Award Number: R01 AG057234; Alzheimer’s Association, Grant/Award Number: SG-20-725707; Tau Consortium; Alzheimer’s Association GBHI ALZ, Grant/Award Number: UK-20-639295; UKRI Healthy Ageing Challenge Catalyst Award, Grant/Award Number: ES/W006405/1; National Institute for Health Research, Grant/Award Numbers: COV-LT2-0014, ES/S010467/1; Economic and Social Research Council (UK); Alzheimer’s Association Clinician Scientist Fellowship (AACSF), Grant/Award Number: AACSF-22-849085; BrightFocus Foundation, Grant/Award Number: A2021142S

Publisher Copyright:
© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.

UN SDGs

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

SDG 3 Good Health and Well-being

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Alzheimer s Dementia - 2023 - Franzen - Gaps in clinical research in frontotemporal dementia A call for diversity andFinal published version, 407 KBLicence: CC BY

Cite this

Franzen, S., Nuytemans, K., the ISTAART FTD PIA and ISTAART Diversity and Disparities PIA, 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., ... 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{51ad49a074834169895b47c3bf52aedd,

title = "Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities{\textendash}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.",

author = "Sanne Franzen and Karen Nuytemans and \{the ISTAART FTD PIA and ISTAART Diversity and Disparities PIA\} 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 = "Funding information: ZonMW, Grant/Award Number: 73305095007; Health Holland, Topsector Life Sciences \& Health, Grant/Award Number: LSHM20106; GBHI, Alzheimer{\textquoteright}s Association, and Alzheimer{\textquoteright}s Society, Grant/Award Numbers: UK-21-720973, AACSF-21-850193; Instituto de Salud Carlos III, Grant/Award Numbers: JR20/0018, PI21/00791; NIH-NIA, Grant/Award Numbers: R01 AG062588, R01 AG057234, P30 AG062422, R01AG068183, R01AG056466, R01AG067428, R01AG074302; NIH-NINDS, Grant/Award Number: U54 NS123985; Rainwater Charitable Foundation; Global Brain Health Institute; Mary Oakley Foundation; NIDCD, Grant/Award Number: K23 DC018021; National Health and Medical Research Council Career Development Fellowship, Grant/Award Number: GNT1158762; ANID/FONDAP/ID15150012; ANID/FONDEF/ID22I10251; ANID/Fondecyt Regular/1210195 \& 1191726; ANID/PIA/Anillos, Grant/Award Number: ACT210096; National Institutes of Health, National Institutes of Aging, Grant/Award Number: R01 AG057234; Alzheimer{\textquoteright}s Association, Grant/Award Number: SG-20-725707; Tau Consortium; Alzheimer{\textquoteright}s Association GBHI ALZ, Grant/Award Number: UK-20-639295; UKRI Healthy Ageing Challenge Catalyst Award, Grant/Award Number: ES/W006405/1; National Institute for Health Research, Grant/Award Numbers: COV-LT2-0014, ES/S010467/1; Economic and Social Research Council (UK); Alzheimer{\textquoteright}s Association Clinician Scientist Fellowship (AACSF), Grant/Award Number: AACSF-22-849085; BrightFocus Foundation, Grant/Award Number: A2021142S 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",

volume = "19",

pages = "5817--5836",

journal = "Alzheimer's and Dementia",

issn = "1552-5260",

publisher = "John Wiley \& Sons Inc.",

number = "12",

}

Franzen, S, Nuytemans, K, the ISTAART FTD PIA and ISTAART Diversity and Disparities PIA, 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 - the ISTAART FTD PIA and ISTAART Diversity and Disparities PIA

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.

N1 - Funding information: ZonMW, Grant/Award Number: 73305095007; Health Holland, Topsector Life Sciences & Health, Grant/Award Number: LSHM20106; GBHI, Alzheimer’s Association, and Alzheimer’s Society, Grant/Award Numbers: UK-21-720973, AACSF-21-850193; Instituto de Salud Carlos III, Grant/Award Numbers: JR20/0018, PI21/00791; NIH-NIA, Grant/Award Numbers: R01 AG062588, R01 AG057234, P30 AG062422, R01AG068183, R01AG056466, R01AG067428, R01AG074302; NIH-NINDS, Grant/Award Number: U54 NS123985; Rainwater Charitable Foundation; Global Brain Health Institute; Mary Oakley Foundation; NIDCD, Grant/Award Number: K23 DC018021; National Health and Medical Research Council Career Development Fellowship, Grant/Award Number: GNT1158762; ANID/FONDAP/ID15150012; ANID/FONDEF/ID22I10251; ANID/Fondecyt Regular/1210195 & 1191726; ANID/PIA/Anillos, Grant/Award Number: ACT210096; National Institutes of Health, National Institutes of Aging, Grant/Award Number: R01 AG057234; Alzheimer’s Association, Grant/Award Number: SG-20-725707; Tau Consortium; Alzheimer’s Association GBHI ALZ, Grant/Award Number: UK-20-639295; UKRI Healthy Ageing Challenge Catalyst Award, Grant/Award Number: ES/W006405/1; National Institute for Health Research, Grant/Award Numbers: COV-LT2-0014, ES/S010467/1; Economic and Social Research Council (UK); Alzheimer’s Association Clinician Scientist Fellowship (AACSF), Grant/Award Number: AACSF-22-849085; BrightFocus Foundation, Grant/Award Number: A2021142S Publisher Copyright: © 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.

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.

UR - https://www.scopus.com/pages/publications/85161401501

U2 - 10.1002/alz.13129

DO - 10.1002/alz.13129

M3 - Article

C2 - 37270665

AN - SCOPUS:85161401501

SN - 1552-5260

VL - 19

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

Bibliographical note

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