Evidence map›Paper›PMID 37270665›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2023

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 and 34 more

Open access · hybridAbstract read
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.

0numbers the graph read from it
0cells of the map it votes in
20citing papers in PubMed
5.8field-weighted citation impact, top 3% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

20 citing papers in PubMed, 26 citations in OpenAlex.

  1. Trial
  2. Trial
  3. Mapping the Young-Onset Dementia Research in the Asia-Pacific Region: A Scoping Review.Asia-Pacific psychiatry : official journal of the Pacific Rim College of Psychiatrists · 2026
    Article
  4. Article
  5. Article
  6. Emerging directions in tauopathy research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
    Review
  7. Scientific knowledge about dementia: From the Global South to the world.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
    Review
  8. Review
  9. Article
  10. Observational
  11. Caregiver perspectives enable accurate diagnosis of neurodegenerative disease.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
  12. Article
  13. Gaps in biomedical research in frontotemporal dementia: A call for diversity and disparities focused research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Review
  14. Article
  15. Article
  16. Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities-focused research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023
    Article
  17. Article
  18. Article
  19. Article
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

44 authors at 20 institutions in 17 countries.

Sanne FranzenDepartment of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, the Netherlands.
Karen NuytemansJohn 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.
Renelle BourdageDepartment of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, the Netherlands.
Paulo CaramelliBehavioral and Cognitive Neurology Research Group, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte (MG), Brazil.
Ratnavalli EllajosyulaManipal Hospitals, Bangalore and Annasawmy Mudaliar Hospital, Bangalore, India.
Elizabeth FingerParkwood Institute Research, London, Ontario, Canada.
Ignacio Illán-GalaSant 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.
Samantha M LoiNeuropsychiatry, Royal Melbourne Hospital, Parkville, Victoria, Australia.
Darby MorhardtMesulam Center for Cognitive Neurology and Alzheimer's Disease and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Yolande PijnenburgAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
Katya RascovskyDepartment of Neurology and Penn Frontotemporal Degeneration Center, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Monique M WilliamsSt. Louis Oak Street Health, St. Louis, Missouri, USA.
Jennifer S YokoyamaMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Suvarna AlladiNational Institute of Mental Health and Neurosciences, Bangalore, India.
Yavuz AyhanFaculty of Medicine, Department of Psychiatry, Hacettepe University, Ankara, Turkey.
Iris BroceMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Sheila Castro-SuarezCBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso, Instituto Nacional de Ciencias Neurológicas, Lima, Peru.
Kristy ColemanParkwood Institute Research, London, Ontario, Canada.
Leonardo Cruz de SouzaDepartment of Internal Medicine, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil.
Penny A DacksThe Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
Sterre C M de BoerAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
Jessica de LeonMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Shana DodgeThe Association for Frontotemporal Degeneration, King of Prussia, Pennsylvania, USA.
Stephanie GrassoSpeech, Language and Hearing Sciences, The University of Texas at Austin, Austin, Texas, USA.
Veer GuptaIMPACT-The Institute for Mental and Physical Health and Clinical Translation, School of Medicine, Deakin University, Geelong, Victoria, Australia.
Vivek GuptaMacquarie Medical School, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia.
Nupur GhoshalDepartments of Neurology and Psychiatry, Knight Alzheimer Disease Research Center, Washington University School of Medicine, St. Louis, Missouri, USA.
Vidyulata KamathDepartment of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Fiona KumforBrain & Mind Centre and the School of Psychology, The University of Sydney, Sydney, New South Wales, Australia.
Jordi A Matias-GuiuDepartment of Neurology, Hospital Clinico San Carlos, San Carlos Institute for Health Research (IdiSSC), Universidad Complutense, Madrid, Spain.
Pauline NarmeLaboratoire Mémoire Cerveau et Cognition (UR 7536), Institut de Psychologie, Université Paris Cité, Boulogne-Billancourt, France.
T Rune NielsenDanish Dementia Research Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Copenhagen, Denmark.
Daniel OkhuevbieDepartment of Cell Biology and Genetics, University of Lagos, Lagos, Nigeria.
Stefanie D Piña-EscuderoMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Ramiro Ruiz GarciaParkwood Institute Research, London, Ontario, Canada.
Marta ScarioniAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
Andrea SlachevskyGeroscience Center for Brain Health and Metabolism (GERO), Santiago, Chile.
Aida Suarez-GonzalezDementia Research Centre, UCL Queen Square Institute of Neurology, University College London, London, UK.
Boon Lead TeeMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Elena TsoyMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, California, USA.
Hülya UlugutAlzheimer Center Amsterdam, Neurology, Vrije Universiteit Amsterdam, Amsterdam UMC location VUmc, Amsterdam, the Netherlands.
Ganesh M BabulalDepartment of Neurology, Washington University in St. Louis, St. Louis, Missouri, USA.
Chiadi U OnyikeDepartment of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
ISTAART FTD PIA and ISTAART Diversity and Disparities PIA
Trinity College Dublin · IEAmsterdam University Medical Centers · NLAssociation for Frontotemporal Degeneration · USDeakin University · AUUniversidade Federal de Minas Gerais · BRUniversity of California, San Francisco · USWestern University · CACopenhagen University Hospital · DKDr. John T. Macdonald Foundation · USErasmus MC · NLHacettepe University · TRHope Center for Neurological Disorders · USHospital Clínico San Carlos · ESHospital de Sant Pau · ESJohns Hopkins Medicine · USJohns Hopkins University · USLaboratoire Mémoire et Cognition · FRManipal Academy of Higher Education · INNational Institute of Mental Health and Neurosciences · INNorthwestern University · US

Funding

TDP-43 Loss-of-Function: Biology to BiomarkersP01AG019724 · NIA · UNIVERSITY OF PENNSYLVANIA · PI Jennifer Merrilees · 2002 to 2026
$67.2M
Research Education ComponentP30AG062422 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Katherine P Rankin · 2019 to 2026
$36.9M
Research Education Core FP30AG072977 · NIA · NORTHWESTERN UNIVERSITY AT CHICAGO · PI ROBERT J VASSAR · 2021 to 2026
$26.3M
Tau Metabolism in FTD: From Gene Mutations to Molecular Chaperones and Lysosomal ProteasesU54NS123985 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI KARCH, CELESTE MARIE · 2021 to 2025
$9.0M
Augmenting Nurse Support and EHR Integration for the Pragmatic Trial of the UCSF-BHAU01NS128913 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Katherine Laurel Possin · 2022 to 2026
$8.2M
Naturalistic driving as a functional neurobehavioral marker of preclinical and symptomatic Alzheimer diseaseR01AG068183 · NIA · WASHINGTON UNIVERSITY · PI BABULAL, GANESH M · 2020 to 2024
$6.7M
US-South American Initiative for Genetic-Neural-Behavioral Interactions in Human Neurodegenerative ResearchR01AG057234 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Claudia Duran-Aniotz, Agustin M. Ibanez · 2019 to 2026
$6.1M
Preclinical Alzheimer Disease and DrivingR01AG056466 · NIA · WASHINGTON UNIVERSITY · PI BABULAL, GANESH M · 2017 to 2021
$5.9M
Chinese language versions of the National Alzheimer's Coordinating Center's Uniform Data Set version 4: a linguistic and cultural adaptation studyR01AG083840 · NIA · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · PI Clara Li, Boon Lead Tee · 2023 to 2026
$5.3M
Program Development and Pilot CoreP30AG066614 · NIA · UNIVERSITY OF TEXAS AT AUSTIN · PI KAREN L FINGERMAN · 2020 to 2026
$5.2M
Elucidating clinical heterogeneity in early-onset AD via genomics, transcriptomics, and neuroimagingR01AG062588 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI YOKOYAMA, JENNIFER S · 2019 to 2023
$4.0M
The impact of bilingualism on cognitive reserve/resilience using socio-demographically and linguistically diverse populationsR01AG080469 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Suvarna Alladi, Ganesh M Babulal · 2023 to 2026
$4.0M
Alzheimer's Association SG-20-725707NIA NIH HHS K01 AG070376NIA NIH HHS P01 AG019724NIA NIH HHS P30 AG062422NIA NIH HHS P30 AG066614NIA NIH HHS P30 AG072977NIA NIH HHS R01 AG056466NIA NIH HHS R01 AG057234NIA NIH HHS R01 AG062588NIA NIH HHS R01 AG067428NIA NIH HHS R01 AG068183NIA NIH HHS R01 AG074302NIA NIH HHS R01 AG080396NIA NIH HHS R01 AG080469NIA NIH HHS R01 AG080470NIA NIH HHS R01 AG083840NIA NIH HHS R21 AG068757NIA NIH HHS R21 AG080410NIDCD NIH HHS K23 DC018021NINDS NIH HHS R25 NS117367NINDS NIH HHS U01 NS128913NINDS NIH HHS U54 NS123985ZonMw 73305095007
6 · The paper itself

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.

Indexed as

Alzheimer DiseaseFrontotemporal DementiaAgedEuropeHumansLanguageNeuropsychological Testscultural diversitydiagnosisethnicityfrontotemporal dementialanguageliteracyneuropsychological testsprimary progressive aphasia

Identifiers

PMID37270665
PMCPMC10693651
OpenAlexW4379278549

What Socratic holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.