Evidence map›Paper›PMID 34633446›Full record

ArticleBrain : a journal of neurology2022

A data-driven disease progression model of fluid biomarkers in genetic frontotemporal dementia.

Emma L van der Ende, Esther E Bron, Jackie M Poos, Lize C Jiskoot, Jessica L Panman, Janne M Papma, Lieke H Meeter, Elise G P Dopper, Carlo Wilke, Matthis Synofzik and 34 more

Open access · bronzeAbstract read
In one paragraph

Article in Brain : a journal of neurology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
31citing papers in PubMed, 1 pooled it
4.4field-weighted citation impact, top 4% 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

31 citing papers in PubMed, 1 synthesis or guideline pooled it, 60 citations in OpenAlex.

  1. Pooled it
  2. Trial
  3. Composite grey matter fingerprints for genetic frontotemporal dementia.Journal of neurology, neurosurgery, and psychiatry · 2026
    Article
  4. Article
  5. White matter hyperintensities precede other biomarkers in GRN frontotemporal dementia.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
  6. Article
  7. Article
  8. Article
  9. Sex differences in the executive and behavioral reserve of autosomal dominant frontotemporal dementia.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
  10. Review
  11. Article
  12. Article
  13. Blood-Based Biomarkers in Frontotemporal Dementia: A Narrative Review.International journal of molecular sciences · 2024
    Review
  14. Article
  15. Article
  16. Review
  17. Article
  18. Article
  19. Review
  20. Observational
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 10 countries.

Emma L van der EndeDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Esther E BronDepartment of Radiology and Nuclear Medicine, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Jackie M PoosDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.ORCID 0000-0001-8843-7247
Lize C JiskootDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Jessica L PanmanDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Janne M PapmaDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Lieke H MeeterDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Elise G P DopperDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Carlo WilkeGerman Center for Neurodegenerative Diseases (DZNE), 72076 Tübingen, Germany.ORCID 0000-0002-7250-8597
Matthis SynofzikGerman Center for Neurodegenerative Diseases (DZNE), 72076 Tübingen, Germany.ORCID 0000-0002-2280-7273
Carolin HellerUK Dementia Research Institute at University College London, UCL Institute of Neurology, Queen Square, WC1N 3BG London, UK.
Imogen J SwiftUK Dementia Research Institute at University College London, UCL Institute of Neurology, Queen Square, WC1N 3BG London, UK.
Aitana Sogorb-EsteveUK Dementia Research Institute at University College London, UCL Institute of Neurology, Queen Square, WC1N 3BG London, UK.
Arabella BouziguesDepartment of Neurodegenerative Disease, Dementia Research Centre, UCL Institute of Neurology, Queen Square, WC1N 3BG London, UK.
Barbara BorroniCentre for Neurodegenerative Disorders, Department of Clinical and Experimental Sciences, University of Brescia, 25121 Brescia, Italy.
Raquel Sanchez-ValleAlzheimer's Disease and Other Cognitive Disorders Unit, Neurology Service, Hospital Clinic, IDIBAPS, University of Barcelona, 08036 Barcelona, Spain.
Fermin MorenoCognitive Disorders Unit, Department of Neurology, Donostia University Hospital, San Sebastian, 20014 Gipuzkoa, Spain.
Caroline GraffCenter for Alzheimer Research, Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society, Bioclinicum, Karolinska Institutet, 17176 Solna, Sweden.
Robert LaforceClinique Interdisciplinaire de Mémoire, Département des Sciences Neurologiques, CHU de Québec, Université Laval, G1Z 1J4 Québec, Canada.
Daniela GalimbertiCentro Dino Ferrari, University of Milan, 20122 Milan, Italy.
Mario MasellisSunnybrook Health Sciences Centre, Sunnybrook Research Institute, University of Toronto, ON M4N 3M5 Toronto, Canada.
Maria Carmela TartagliaTanz Centre for Research in Neurodegenerative Diseases, University of Toronto, M5S 1A8 Toronto, Canada.
Elizabeth FingerDepartment of Clinical Neurological Sciences, University of Western Ontario, ON N6A 3K7 London, Ontario, Canada.
Rik VandenbergheLaboratory for Cognitive Neurology, Department of Neurosciences, Leuven Brain Institute, KU Leuven, 3000 Leuven, Belgium.
James B RoweCambridge University Centre for Frontotemporal Dementia, University of Cambridge, CB2 0SZ Cambridge, UK.
Alexandre de MendonçaFaculty of Medicine, University of Lisbon, 1649-028 Lisbon, Portugal.
Fabrizio TagliaviniFondazione IRCCS Istituto Neurologico Carlo Besta, 20133 Milan, Italy.
Isabel SantanaCenter for Neuroscience and Cell Biology, Faculty of Medicine, University of Coimbra, 3004-504 Coimbra, Portugal.
Simon DucharmeMcConnell Brain Imaging Centre, Montreal Neurological Institute and McGill University Health Centre, McGill University, 3801 Montreal, Québec, Canada.ORCID 0000-0002-7309-1113
Christopher R ButlerNuffield Department of Clinical Neurosciences, Medical Sciences Division, University of Oxford, OX3 9DU Oxford, UK.
Alexander GerhardDivision of Neuroscience and Experimental Psychology, Wolfson Molecular Imaging Centre, University of Manchester, M20 3LJ Manchester, UK.
Johannes LevinNeurologische Klinik und Poliklinik, Ludwig-Maximilians-Universität München, 81377 Munich, Germany.
Adrian DanekNeurologische Klinik und Poliklinik, Ludwig-Maximilians-Universität München, 81377 Munich, Germany.ORCID 0000-0001-8857-5383
Markus OttoDepartment of Neurology, University of Ulm, 89081 Ulm, Germany.
Yolande A L PijnenburgDepartment of Neurology, Alzheimer Center, Location VU University Medical Center Amsterdam Neuroscience, Amsterdam University Medical Center, 1105 AZ Amsterdam, The Netherlands.
Sandro SorbiDepartment of Neurofarba, University of Florence, 50139 Florence, Italy.
Henrik ZetterbergUK Dementia Research Institute at University College London, UCL Institute of Neurology, Queen Square, WC1N 3BG London, UK.ORCID 0000-0003-3930-4354
Wiro J NiessenDepartment of Radiology and Nuclear Medicine, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Jonathan D RohrerDepartment of Neurodegenerative Disease, Dementia Research Centre, UCL Institute of Neurology, Queen Square, WC1N 3BG London, UK.
Stefan KleinDepartment of Radiology and Nuclear Medicine, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
John C van SwietenDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.
Vikram VenkatraghavanDepartment of Radiology and Nuclear Medicine, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.ORCID 0000-0001-9759-0462
Harro SeelaarDepartment of Neurology and Alzheimer Center, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands.ORCID 0000-0003-1989-7527
GENFI consortium
Erasmus MC · NLUK Dementia Research Institute · GBGerman Center for Neurodegenerative Diseases · DEUniversity of Coimbra · PTKarolinska University Hospital · SEMontreal Neurological Institute and Hospital · CAUniversity Medical Center · USUniversity of Brescia · ITBiogipuzkoa Health Research Institute · ESConsorci Institut D'Investigacions Biomediques August Pi I Sunyer · ESFondazione IRCCS Istituto Neurologico Carlo Besta · ITLudwig-Maximilians-Universität München · DESunnybrook Health Science Centre · CAUniversität Ulm · DEUniversité Laval · CAUniversity of Cambridge · GBUniversity of Florence · ITUniversity of Lisbon · PTUniversity of Manchester · GBUniversity of Milan · IT

Funding

Medical Research Council MC_UU_00024/1Medical Research Council MR/M008525/1Medical Research Council MR/M023664/1Medical Research Council MR/T046015/1Wellcome Trust 103838
6 · The paper itself

Abstract

Several CSF and blood biomarkers for genetic frontotemporal dementia have been proposed, including those reflecting neuroaxonal loss (neurofilament light chain and phosphorylated neurofilament heavy chain), synapse dysfunction [neuronal pentraxin 2 (NPTX2)], astrogliosis (glial fibrillary acidic protein) and complement activation (C1q, C3b). Determining the sequence in which biomarkers become abnormal over the course of disease could facilitate disease staging and help identify mutation carriers with prodromal or early-stage frontotemporal dementia, which is especially important as pharmaceutical trials emerge. We aimed to model the sequence of biomarker abnormalities in presymptomatic and symptomatic genetic frontotemporal dementia using cross-sectional data from the Genetic Frontotemporal dementia Initiative (GENFI), a longitudinal cohort study. Two-hundred and seventy-five presymptomatic and 127 symptomatic carriers of mutations in GRN, C9orf72 or MAPT, as well as 247 non-carriers, were selected from the GENFI cohort based on availability of one or more of the aforementioned biomarkers. Nine presymptomatic carriers developed symptoms within 18 months of sample collection ('converters'). Sequences of biomarker abnormalities were modelled for the entire group using discriminative event-based modelling (DEBM) and for each genetic subgroup using co-initialized DEBM. These models estimate probabilistic biomarker abnormalities in a data-driven way and do not rely on previous diagnostic information or biomarker cut-off points. Using cross-validation, subjects were subsequently assigned a disease stage based on their position along the disease progression timeline. CSF NPTX2 was the first biomarker to become abnormal, followed by blood and CSF neurofilament light chain, blood phosphorylated neurofilament heavy chain, blood glial fibrillary acidic protein and finally CSF C3b and C1q. Biomarker orderings did not differ significantly between genetic subgroups, but more uncertainty was noted in the C9orf72 and MAPT groups than for GRN. Estimated disease stages could distinguish symptomatic from presymptomatic carriers and non-carriers with areas under the curve of 0.84 (95% confidence interval 0.80-0.89) and 0.90 (0.86-0.94) respectively. The areas under the curve to distinguish converters from non-converting presymptomatic carriers was 0.85 (0.75-0.95). Our data-driven model of genetic frontotemporal dementia revealed that NPTX2 and neurofilament light chain are the earliest to change among the selected biomarkers. Further research should investigate their utility as candidate selection tools for pharmaceutical trials. The model's ability to accurately estimate individual disease stages could improve patient stratification and track the efficacy of therapeutic interventions.

Indexed as

Frontotemporal DementiaBiomarkersC9orf72 ProteinComplement C1qCross-Sectional StudiesDisease ProgressionGlial Fibrillary Acidic ProteinHumansLongitudinal StudiesMutationtau ProteinsBiomarkersC9orf72 ProteinComplement C1qGlial Fibrillary Acidic Proteintau Proteinsbiomarkerdisease progression modelevent-based modellingfrontotemporal dementianeurofilament light chain

Identifiers

PMID34633446
PMCPMC9166533
OpenAlexW3205797556

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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.