Evidence map›Paper›PMID 31784375›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2020

Clinical and volumetric changes with increasing functional impairment in familial frontotemporal lobar degeneration.

Nicholas T Olney, Elise Ong, Sheng-Yang M Goh, Lynn Bajorek, Reilly Dever, Adam M Staffaroni, Yann Cobigo, Meredith Bock, Kevin Chiang, Peter Ljubenkov and 78 more

Registry-linked trialOpen access · hybridAbstract read
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02372773 (Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects), which is not on this map. Cited by 32 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
32citing papers in PubMed, 4 pooled it
3.8field-weighted citation impact, top 6% 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.

NCT02372773 completednot on this map

Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects

TypeobservationalSponsorMayo ClinicRan2015 to 2020Enrolled398ConditionsFamilial Frontotemporal Dementia
3 · Its place in the literature

Who cites it

32 citing papers in PubMed, 4 syntheses or guidelines pooled it, 44 citations in OpenAlex.

  1. Pooled it
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  5. Article
  6. Article
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  9. Sex differences in clinical phenotypes of behavioral variant frontotemporal dementia.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
  10. 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
  11. Article
  12. Analysis of convolutional neural networks for fronto-temporal dementia biomarker discovery.International journal of computer assisted radiology and surgery · 2024
    Article
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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

88 authors at 20 institutions in 3 countries.

Nicholas T OlneyDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Elise OngDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Sheng-Yang M GohDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Lynn BajorekDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Reilly DeverDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Adam M StaffaroniDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Yann CobigoDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Meredith BockDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Kevin ChiangDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Peter LjubenkovDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
John KornakDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Hilary W HeuerDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Ping WangDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Katya RascovskyDepartment of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Amelia WolfDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Brian ApplebyDepartment of Neurology, Case Western Reserve University, Cleveland, OH, USA.
Jessica BoveDepartment of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Yvette BordelonDepartment of Neurology, University of California, Los Angeles, Los Angeles, CA, USA.
Patrick BrannellyTau Consortium, Rainwater Charitable Foundation, Fort Worth, TX, USA.
Danielle BrushaberDepartment of Health Sciences Research, Mayo Clinic, Rochester, MN, USA.
Christine CasoDepartment of Neurology, University of Washington, Seattle, WA, USA.
Giovanni CoppolaDepartment of Neurology, University of California, Los Angeles, Los Angeles, CA, USA.
Bradford C DickersonDepartment of Neurology, Frontotemporal Disorders Unit, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Susan DickinsonAssociation for Frontotemporal Degeneration, Radnor, PA, USA.
Kimiko Domoto-ReillyDepartment of Neurology, University of Washington, Seattle, WA, USA.
Kelly FaberNational Centralized Repository for Alzheimer's Disease and Related Disorders (NCRAD), Indiana University, Indianapolis, IN, USA.
Jessica FerrallDepartment of Neurology, University of North Carolina, Chapel Hill, NC, USA.
Julie FieldsDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Ann FishmanDepartment of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
Jamie FongDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Tatiana ForoudNational Centralized Repository for Alzheimer's Disease and Related Disorders (NCRAD), Indiana University, Indianapolis, IN, USA.
Leah K ForsbergDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Debra J GearhartDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Behnaz GhazanfariDivision of Neurology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
Nupur GhoshalDepartment of Psychiatry, Washington University, St. Louis, MO, USA.
Jill GoldmanTaub Institute for Research on Alzheimer's Disease and the Aging Brain, Columbia University, New York, NY, USA.
Jonathan Graff-RadfordDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Neill R Graff-RadfordDepartment of Neurology, Mayo Clinic, Jacksonville, FL, USA.
Ian GrantDepartment of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
Murray GrossmanDepartment of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Dana HaleyDepartment of Neurology, Mayo Clinic, Jacksonville, FL, USA.
Gingyuek HsiungDivision of Neurology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
Edward D HueyTaub Institute for Research on Alzheimer's Disease and the Aging Brain, Columbia University, New York, NY, USA.
David J IrwinDepartment of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
David T JonesDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Kejal KantarciDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Anna M KarydasDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Daniel KauferDepartment of Neurology, University of North Carolina, Chapel Hill, NC, USA.
Diana KerwinDepartment of Neurology and Neurotherapeutics, Center for Alzheimer's and Neurodegenerative Diseases, The University of Texas, Southwestern Medical Center at Dallas, Dallas, TX, USA.
David S KnopmanDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Joel H KramerDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Ruth KraftDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Walter KremersDepartment of Health Sciences Research, Mayo Clinic, Rochester, MN, USA.
Walter KukullNational Alzheimer Coordinating Center (NACC), University of Washington, Seattle, WA, USA.
Maria I LapidDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Irene LitvanDepartment of Neurosciences, Parkinson and Other Movement Disorders Center, University of California, San Diego, San Diego, CA, USA.
Ian R MackenzieDepartment of Pathology and Laboratory Medicine, University of British Columbia, Vancouver, BC, Canada.
Miranda MaldonadoDepartment of Neurology, University of California, Los Angeles, Los Angeles, CA, USA.
Masood ManoochehriTaub Institute for Research on Alzheimer's Disease and the Aging Brain, Columbia University, New York, NY, USA.
Scott M McGinnisDepartment of Neurology, Frontotemporal Disorders Unit, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Emily C McKinleyDepartment of Neurology, Alzheimer's Disease Center, University of Alabama at Birmingham, Birmingham, AL, USA.
Mario F MendezDepartment of Neurology, University of California, Los Angeles, Los Angeles, CA, USA.
Bruce L MillerDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Chiadi OnyikeDepartment of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
Alex PantelyatDepartment of Neurology, School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
Rodney PearlmanThe Bluefield Project, San Francisco, CA, USA.
Len PetrucelliDepartment of Neurology, Mayo Clinic, Jacksonville, FL, USA.
Madeleine PotterNational Centralized Repository for Alzheimer's Disease and Related Disorders (NCRAD), Indiana University, Indianapolis, IN, USA.
Rosa RademakersDepartment of Neurology, Mayo Clinic, Jacksonville, FL, USA.
Eliana M RamosDepartment of Neurology, University of California, Los Angeles, Los Angeles, CA, USA.
Katherine P RankinDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Erik D RobersonDepartment of Neurology, Alzheimer's Disease Center, University of Alabama at Birmingham, Birmingham, AL, USA.
Emily RogalskiDepartment of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
Pheth SengdyDivision of Neurology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
Leslie M ShawDepartment of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Jeremy SyrjanenDepartment of Health Sciences Research, Mayo Clinic, Rochester, MN, USA.
M Carmela TartagliaDivision of Neurology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
Nadine TattonAssociation for Frontotemporal Degeneration, Radnor, PA, USA.
Joanne TaylorDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Arthur TogaLaboratory of Neuroimaging (LONI), University of Southern California, Los Angeles, CA, USA.
John Q TrojanowskiDepartment of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Sandra WeintraubDepartment of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
Bonnie WongDepartment of Neurology, Frontotemporal Disorders Unit, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Zbigniew WszolekDepartment of Neurology, Mayo Clinic, Jacksonville, FL, USA.
Adam L BoxerDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
Brad F BoeveDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Howard J RosenDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, CA, USA.
ARTFL and LEFFTDS consortia
University of California, San Francisco · USMayo Clinic in Arizona · USUniversity Memory and Aging Center · USUniversity of Pennsylvania · USMayo Clinic in Florida · USUniversity of California, Los Angeles · USColumbia University · USMassachusetts General Hospital · USNorthwestern University · USUniversity of British Columbia · CAAlzheimer’s Disease Neuroimaging Initiative · USAssociation for Frontotemporal Degeneration · USJacksonville College · USJohns Hopkins Medicine · USUniversity of Alabama at Birmingham · USUniversity of North Carolina at Chapel Hill · USUniversity of Washington · USBluefield State College · USCase Western Reserve University · USCognitive Neuroimaging Lab · FR

Funding

Technology and Remote Assessment CoreU19AG063911 · NIA · MAYO CLINIC ROCHESTER · PI Bradley F Boeve · 2019 to 2026
$120.9M
National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD)U24AG021886 · NIA · INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS · PI TATIANA M. FOROUD · 2002 to 2026
$119.8M
NATIONAL ALZHEIMERS COORDINATING CENTER (NACC)U01AG016976 · NIA · UNIVERSITY OF WASHINGTON · PI KUKULL, WALTER ANTHONY · 1999 to 2020
$72.8M
TDP-43 Loss-of-Function: Biology to BiomarkersP01AG019724 · NIA · UNIVERSITY OF PENNSYLVANIA · PI Jennifer Merrilees · 2002 to 2026
$67.2M
THERAPEUTIC EFFECTS OF INTRA-NASAL INSULIN DETEMIRP50AG005136 · NIA · UNIVERSITY OF WASHINGTON · PI JAYADEY, SUMAN · 1985 to 2019
$57.2M
Satellite Diagnostic and Treatment Clinic CoreP50AG008702 · NIA · COLUMBIA UNIV NEW YORK MORNINGSIDE · PI DE JAGER, PHILIP L · 1989 to 2019
$46.3M
Research Education ComponentP30AG062421 · NIA · MASSACHUSETTS GENERAL HOSPITAL · PI Christine S Ritchie · 2019 to 2026
$36.5M
University of Washington Alzheimer's Disease Research CenterP30AG066509 · NIA · UNIVERSITY OF WASHINGTON · PI SUMAN JAYADEV · 2020 to 2026
$29.0M
Neuropathology CoreP30AG013854 · NIA · NORTHWESTERN UNIVERSITY AT CHICAGO · PI BIGIO, EILEEN H. · 1996 to 2020
$28.9M
Understanding Environmental Contributions to Heterogeneity in bvFTD.P01AG066597 · NIA · UNIVERSITY OF PENNSYLVANIA · PI David John Irwin, Corey T McMillan · 2020 to 2026
$18.8M
The Four Repeat Tauopathy Neuroimaging InitiativeR01AG038791 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BOXER, ADAM L. · 2010 to 2020
$18.1M
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
NIA NIH HHS K23 AG061253NIA NIH HHS K24 AG045333NIA NIH HHS P01 AG019724NIA NIH HHS P01 AG066597NIA NIH HHS P30 AG013854NIA NIH HHS P30 AG062421NIA NIH HHS P30 AG066509NIA NIH HHS P50 AG005136NIA NIH HHS P50 AG008702NIA NIH HHS R01 AG032306NIA NIH HHS R01 AG038791NIA NIH HHS R01 AG055121NIA NIH HHS T32 AG023481NIA NIH HHS U01 AG016976NIA NIH HHS U01 AG045390NIA NIH HHS U19 AG063911NIA NIH HHS U24 AG021886NINDS NIH HHS U54 NS092089
6 · The paper itself

Abstract

introductionThe Advancing Research and Treatment in Frontotemporal Lobar Degeneration and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects longitudinal studies were designed to describe the natural history of familial-frontotemporal lobar degeneration due to autosomal dominant mutations.

methodsWe examined cognitive performance, behavioral ratings, and brain volumes from the first time point in 320 MAPT, GRN, and C9orf72 family members, including 102 non-mutation carriers, 103 asymptomatic carriers, 43 mildly/questionably symptomatic carriers, and 72 carriers with dementia.

resultsAsymptomatic carriers showed similar scores on all clinical measures compared with noncarriers but reduced frontal and temporal volumes. Those with mild/questionable impairment showed decreased verbal recall, fluency, and Trail Making Test performance and impaired mood and self-monitoring. Dementia was associated with impairment in all measures. All MAPT carriers with dementia showed temporal atrophy, but otherwise, there was no single cognitive test or brain region that was abnormal in all subjects. DISCUSSION: Imaging changes appear to precede clinical changes in familial-frontotemporal lobar degeneration, but specific early clinical and imaging changes vary across individuals.

Indexed as

Frontotemporal Lobar DegenerationGenetic Predisposition to DiseaseAtrophyC9orf72 ProteinFemaleHumansImage Processing, Computer-AssistedLongitudinal StudiesMagnetic Resonance ImagingMaleMiddle AgedNeuropsychological TestsProgranulinstau ProteinsTemporal LobeC9orf72 ProteinC9orf72 protein, humanGRN protein, humanMAPT protein, humanProgranulinstau ProteinsC9ORF72FamilialFrontotemporal lobar degenerationGeneticGRNMAPT

Identifiers

PMID31784375
PMCPMC6988137
OpenAlexW2990551040

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Registered trials

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.