Evidence map›Paper›PMID 39535468›Full record

ReviewAlzheimer's & dementia : the journal of the Alzheimer's Association2024

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

Karen Nuytemans, Sanne Franzen, Iris J Broce, Paulo Caramelli, Ratnavalli Ellajosyula, Elizabeth Finger, Veer Gupta, Vivek Gupta, Ignacio Illán-Gala, Samantha M Loi and 37 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed, 2 pooled it
–field-weighted citation impact
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

11 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Review
  4. Emerging directions in tauopathy research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
    Review
  5. Article
  6. Phenotypic diversity of frontotemporal lobar degeneration in two novel GRN variants from Colombia.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
    Article
  7. Article
  8. Article
  9. Review
  10. Article
  11. 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
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

47 authors.

Karen NuytemansJohn P. Hussman Institute for Human Genomics, University of Miami, Miller School of Medicine, Miami, Florida, USA.ORCID 0000-0003-2670-4914
Sanne FranzenDepartment of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Iris J BroceDepartment of Neurosciences, University of California San Diego, La Jolla, California, USA.
Paulo CaramelliBehavioral and Cognitive Neurology Unit, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
Ratnavalli EllajosyulaManipal Hospitals, Bangalore and Annasawmy Mudaliar Hospital, Bangalore, India.
Elizabeth FingerParkwood Institute Research, London, London, Ontario, Canada.
Veer GuptaIMPACT-The Institute for Mental and Physical Health and Clinical Translation, School of Medicine, Deakin University, Waurn Ponds, Victoria, Australia.
Vivek GuptaMacquarie Medical school, Faculty of Medicine, Health and Human Sciences, Macquarie University, Macquarie Park, New South Wales, Australia.
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, North Holland, The Netherlands.
Katya RascovskyDepartment of Neurology and Penn Frontotemporal Degeneration Center, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Monique M WilliamsOak Street Health - North City, St. Louis, Missouri, USA.
Jennifer S YokoyamaMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
Juliana Acosta-UribeGrupo de Neurociencias de Antioquia, Universidad de Antioquia, Medellín, Antioquia, Colombia.
Rufus AkinyemiNeuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Ibadan, Oyo, Nigeria.
Suvarna AlladiDepartment of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, India.
Biniyam A AyeleJohn P. Hussman Institute for Human Genomics, University of Miami, Miller School of Medicine, Miami, Florida, USA.
Yavuz AyhanInstitute of Neurological Sciences and Psychiatry, Hacettepe University, Sıhhiye/Altindag, Ankara, Turkey.
Renelle BourdageDepartment of Neurology and Alzheimer Center, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
Sheila Castro-SuarezCBI en Demencias y Enfermedades Desmielinizantes del Sistema Nervioso, Instituto Nacional de Ciencias Neurológicas, Lima, Peru.
Leonardo Cruz de SouzaBehavioral and Cognitive Neurology Unit, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
Penny 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, North Holland, The Netherlands.
Jessica de LeonMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, 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.
Nupur GhoshalDepts. of Neurology and Psychiatry, Knight Alzheimer Disease Research Center, Washington University School of Medicine, Saint 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, Camperdown, 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, Copenhagen University Hospital, Rigshospitalet, and Department of Phychology, University of Copenhagen, Copenhagen, Denmark.
Daniel OkhuevbieDepartment of Cell Biology and Genetics, University of Lagos, Tafawa Balewa, Lagos, Nigeria.
Stefanie Piña-EscuderoMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
Ramiro Ruiz-GarciaParkwood Institute Research, London, London, Ontario, Canada.
Brigid RyanDepartment of Anatomy and Medical Imaging, University of Auckland, Auckland, New Zealand.
Marta ScarioniDepartment of Neurology, Ghent University Hospital, Ghent, Belgium.
Andrea SlachevskyGeroscience Center for Brain Health and Metabolism (GERO), Ñuñoa Santiago, 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, San Francisco, California, USA.
Elena TsoyMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
Hulya UlugutMemory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, California, USA.
Chiadi U OnyikeDepartment of Psychiatry and Behavioral Sciences, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Ganesh M BabulalDepartment of Neurology, Washington University in St. Louis, St. Louis, Missouri, USA.
ISTAART Frontotemporal Dementia and Related Disorders PIA, ISTAART Diversity and Disparities PIA

Funding

Technology and Remote Assessment CoreU19AG063911 · NIA · MAYO CLINIC ROCHESTER · PI Bradley F Boeve · 2019 to 2026
$120.9M
Recruitment and Retention for Alzheimer's Disease Diversity Genetic Cohorts in the ADSP (READD-ADSP)U19AG074865 · NIA · UNIVERSITY OF MIAMI SCHOOL OF MEDICINE · PI GOLDIE S. BYRD, William S Bush · 2022 to 2026
$55.3M
Research Education ComponentP30AG062422 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Jennifer S Yokoyama · 2019 to 2026
$36.9M
Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS)U01AG045390 · NIA · MAYO CLINIC ROCHESTER · PI BOEVE, BRADLEY F, ROSEN, HOWARD J · 2014 to 2018
$16.9M
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
An automated machine learning approach to language changes in Alzheimer’s disease and frontotemporal dementia across Latino and English-speaking populationsR01AG075775 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI MARIA LUISA GORNO TEMPINI, Adolfo Martin Garcia · 2023 to 2026
$7.2M
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
Training - The Frontotemporal Lobar Degeneration Clinical Research ConsortiumU54NS092089 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BOXER, ADAM L. · 2014 to 2018
$6.4M
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
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
Agencia Nacional de Investigación y Desarollo (ANID)Alzheimer's Association AACSF-21-850193 to I.I.-G.Alzheimer's Association AACSF-22-849085 to H.U.Alzheimer's Association SG-20-725707 to A.S.ANID/ Fondecyt Regular 1231839 to A.S.Association for Frontotemporal Dementia (AFTD)Bluefield Project to Cure Frontotemporal DementiaBrightFocus Foundation A2021142S to G.B.Department of Defense W81XWH2110437 to K.N.FONDAP ID15150012 to A.S.Global Brain Health InstituteHealth Holland, Topsector Life Sciences & Health #LSHM20106 to S.F.Health Holland, Topsector Life Sciences & Health PPP-allowance to S.F.Health Resources and Service Administration to D.M.IDEX FellowshipInstituto de Salud Carlos III JR20/0018 to I.I.-G.Instituto de Salud Carlos III PI21/00791 to I.I.-G.Mary Oakley FoundationNational Health and Medical Research Council Career Development Fellowship GNT1158762 to F.K.National Institute for Health Research COV-LT2-0014 to A.S.-G.National Institutes of Health's/National Institute on Aging P30AG062422 to J.S.Y.National Institutes of Health's/National Institute on Aging R01AG056466 to G.B.National Institutes of Health's/National Institute on Aging R01AG057234 to A.S.National Institutes of Health's/National Institute on Aging R01AG057234 to J.A-U.National Institutes of Health's/National Institute on Aging R01AG057234 to J.S.Y.National Institutes of Health's/National Institute on Aging R01AG062588 to J.S.Y.National Institutes of Health's/National Institute on Aging R01AG067428 to G.B.National Institutes of Health's/National Institute on Aging R01AG068183 to G.B.National Institutes of Health's/National Institute on Aging R01AG074302 to G.B.National Institutes of Health's/National Institute on Aging R01AG075775 to A.S.National Institutes of Health's/National Institute on Aging R01AG075775 to J.A-U.National Institutes of Health's/National Institute on Aging R01AG080469 to B.L.T.National Institutes of Health's/National Institute on Aging R01AG083840 to B.L.T.National Institutes of Health's/National Institute on Aging R01AG21051 to A.S.National Institutes of Health's/National Institute on Aging R01AG21051 to J.A-U.NIA NIH HHS K01 AG070376NIA NIH HHS P30 AG062422NIA 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 AG075775NIA NIH HHS R01 AG080396NIA NIH HHS R01 AG080469NIA NIH HHS R01 AG083840NIA NIH HHS U01 AG045390NIA NIH HHS U19 AG063911NIA NIH HHS U19 AG074865NIDCD NIH HHS K23 DC018021NIH/Center for Alzheimer's and Related Dementies (CARD)NIH HHS U01AG045390 to N.G.NIH HHS U19AG063911 to N.G.NIH HHS U54NS092089 to N.G.NIH/National Institute of Neurological Disorders and Stroke (NINDS) U54NS123985 to J.S.Y.NINDS NIH HHS U54 NS092089NINDS NIH HHS U54 NS123985Rainwater Charitable FoundationRainwater Charitable Foundation's Tau ConsortiumRobert and Nancy Hall Brain Research FundUK Research and Innotation Healthy Ageing Challenge Catalyst Award ES/W006405/1 to A.S.-G.Velux foundationZonMw #73305095007 to S.F.
6 · The paper itself

Abstract

Frontotemporal dementia (FTD) is one of the leading causes of young-onset dementia before age 65, typically manifesting as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). Although FTD affects all populations across the globe, knowledge regarding the pathophysiology and genetics derives primarily from studies conducted in North America and Western Europe. Globally, biomedical research for FTD is hindered by variable access to diagnosis, discussed in this group's earlier article, and by reduced access to expertise, funding, and infrastructure. This perspective paper was produced by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART) and discusses the field's current status on the cross-cultural aspects of basic and translational research in FTD (including that focused on epidemiology, genetics, biomarkers, and treatment). It subsequently provides a summary of gaps and needs to address the disparities and advance global FTD biomedical research.

Indexed as

Biomedical ResearchFrontotemporal DementiaCultural DiversityHealthcare DisparitiesHumansbiomarkerscultural diversityepidemiologyethnicityfrontotemporal dementiageneticsinfrastructure

Identifiers

PMID39535468
PMCPMC11667558

What OpenQuestion holds

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Registered trials

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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 OpenQuestion graph.