Evidence map›Paper›PMID 36627201›Full record

ArticleJournal of neurology, neurosurgery, and psychiatry2023

Neuropsychiatric symptoms in genetic frontotemporal dementia: developing a new module for Clinical Rating Scales.

Kiran Samra, Amy Macdougall, Georgia Peakman, Arabella Bouzigues, Martina Bocchetta, David M Cash, Caroline V Greaves, Rhian S Convery, John C van Swieten, Lize C Jiskoot and 28 more

Open access · hybridAbstract read
In one paragraph

Article in Journal of neurology, neurosurgery, and psychiatry, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed, 1 pooled it
3.6field-weighted citation impact, top 7% 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

10 citing papers in PubMed, 1 synthesis or guideline pooled it, 16 citations in OpenAlex.

  1. Pooled it
  2. Depression and apathy in frontotemporal dementia: a short assessment of facts and outlook.Journal of neural transmission (Vienna, Austria : 1996) · 2026
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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

38 authors at 20 institutions in 10 countries.

Kiran SamraDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.ORCID 0000-0002-3105-7099
Amy MacdougallLondon School of Hygiene & Tropical Medicine, London, UK.
Georgia PeakmanDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.ORCID 0000-0002-3319-138X
Arabella BouziguesDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.
Martina BocchettaDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.ORCID 0000-0003-1814-5024
David M CashDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.
Caroline V GreavesDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.
Rhian S ConveryDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.ORCID 0000-0002-9477-1812
John C van SwietenNeurology, Erasmus MC, Rotterdam, The Netherlands.ORCID 0000-0001-6278-6844
Lize C JiskootNeurology, Erasmus MC, Rotterdam, The Netherlands.ORCID 0000-0002-1120-1858
Harro SeelaarNeurology, Erasmus MC Alzheimer Centre, Rotterdam, The Netherlands.ORCID 0000-0003-1989-7527
Fermin MorenoCognitive Disorders Unit, Department of Neurology, Donostia University Hospital Gipuzkoa Building, San Sebastian, Spain.
Raquel Sánchez-ValleAlzheimer's Disease and Other Cognitive Disorders Unit, Neurology Service, Hospital Clinic de Barcelona, Barcelona, Spain.
Robert LaforceInterdisciplinary Memory Clinic, Department of Neurological Sciences, Laval University, Quebec, Quebec, Canada.
Caroline GraffCenter for Alzheimer Research, Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
Mario MasellisNeurology, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
Maria Carmela TartagliaTanz Centre for Research in Neurodegenerative Disease, University of Toronto, Toronto, Ontario, Canada.
James B RoweDepartment of Clinical Neurosciences, University of Cambridge, Cambridge, UK.ORCID 0000-0001-7216-8679
Barbara BorroniCentre for Ageing Brain and Neurodegenerative Disorders, Neurology Unit, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.ORCID 0000-0001-9340-9814
Elizabeth FingerClinical Neurological Sciences, University of Western Ontario, London, Ontario, Canada.ORCID 0000-0003-4461-7427
Matthis SynofzikDept. of Neurodegenerative Diseases, Eberhard Karls University Tubingen Hertie Institute for Clinical Brain Research, Tubingen, Germany.ORCID 0000-0002-2280-7273
Daniela GalimbertiDepartment of Neurological Sciences, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.ORCID 0000-0002-9284-5953
Rik VandenbergheLaboratory for Cognitive Neurology, Department of Neurosciences, KU Leuven, Leuven, Belgium.
Alexandre de MendoncaFaculty of Medicine, University of Lisbon, Lisboa, Portugal.
Christopher R ButlerNuffield Department of Clinical Neurosciences, University of Oxford, Oxford, UK.
Alexander GerhardDivision of Neuroscience and Experimental Psychology, The University of Manchester, Manchester, UK.ORCID 0000-0002-8071-6062
Simon DucharmeMcConnell Brain Imaging Centre, Department of Neurology & Neurosurgery, Montreal Neurological Institute and Hospital, Montreal, Québec, Canada.ORCID 0000-0002-7309-1113
Isabelle Le BerInserm U1127, CNRS UMR 7225, FrontLab - Reference Centre for Rare or Early Dementias, IM2A, Département de Neurologie, Hôpital Universitaire Pitié Salpêtrière, Sorbonne Université, Paris Brain Institute - Institut du Cerveau - ICM, Paris, France.ORCID 0000-0002-2508-5181
Pietro TiraboschiDivision of Neurology V and Neuropathology, Foundation IRCCS Carlo Besta Neurological Institute, Milano, Italy.ORCID 0000-0002-2171-1720
Isabel SantanaNeurology, Hospital and University Centre of Coimbra, Coimbra, Portugal.
Florence PasquierInserm U1171, University of Lille, Lille, France.
Johannes LevinGerman Center for Neurodegenerative Diseases (DZNE), DZNE, Bonn, Germany.
Markus OttoDepartment of Neurology, University of Ulm, Ulm, Germany.
Sandro SorbiNeurosciences Drugs and Child Health, University of Florence, Firenze, Italy.ORCID 0000-0002-0380-6670
Jonathan D RohrerDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK.ORCID 0000-0002-6155-8417
Lucy L RussellDementia Reseach Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, London, UK l.russell@ucl.ac.uk.
Genetic FTD Initiative (GENFI)
Genetic FTDInitiative (GENFI)
National Hospital for Neurology and Neurosurgery · GBErasmus MC · NLBiogipuzkoa Health Research Institute · ESCentre National de la Recherche Scientifique · FRDon Carlo Gnocchi Foundation · ITFondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico · ITFondazione IRCCS Istituto Neurologico Carlo Besta · ITGerman Center for Neurodegenerative Diseases · DEHertie Institute for Clinical Brain Research · DEHospital Clínic de Barcelona · ESInserm · FRKarolinska University Hospital · SEKU Leuven · BELondon School of Hygiene & Tropical Medicine · GBMontreal Neurological Institute and Hospital · CASunnybrook Health Science Centre · CAUK Dementia Research Institute · GBUniversität Ulm · DEUniversité Laval · CAUniversity of Brescia · IT

Funding

NATIONAL ALZHEIMERS COORDINATING CENTER (NACC)U01AG016976 · NIA · UNIVERSITY OF WASHINGTON · PI KUKULL, WALTER ANTHONY · 1999 to 2020
$72.8M
National Alzheimer's Coordinating CenterU24AG072122 · NIA · UNIVERSITY OF WASHINGTON · PI STEPHENS, KARI A · 2021 to 2025
$45.8M
Department of Health BRC-1215-20014Department of Health BRC149/NS/MHMedical Research Council MR/K010395/1Medical Research Council MR/M008525/1Medical Research Council MR/M023664/1Medical Research Council MR/T046015/1Medical Research Council SUAG/051 G101400NIA NIH HHS U01 AG016976NIA NIH HHS U24 AG072122Wellcome Trust 103838
6 · The paper itself

Abstract

backgroundCurrent clinical rating scales in frontotemporal dementia (FTD) often do not incorporate neuropsychiatric features and may therefore inadequately measure disease stage.

methods832 participants from the Genetic FTD Initiative (GENFI) were recruited: 522 mutation carriers and 310 mutation-negative controls. The standardised GENFI clinical questionnaire assessed the frequency and severity of 14 neuropsychiatric symptoms: visual, auditory, and tactile hallucinations, delusions, depression, anxiety, irritability/lability, agitation/aggression, euphoria/elation, aberrant motor behaviour, hypersexuality, hyperreligiosity, impaired sleep, and altered sense of humour. A principal component analysis (PCA) was performed to identify key groupings of neuropsychiatric and behavioural items in order to create a new neuropsychiatric module that could be used as an addition to the Clinical Dementia Rating (CDR) plus National Alzheimer's Coordinating Center Behaviour and Language Domains (NACC FTLD) rating scale.

resultsOverall, 46.4% of mutation carriers had neuropsychiatric symptoms (51.6%

conclusionsNeuropsychiatric symptoms occur in mutation carriers at all disease stages across all three genetic groups. However, only psychosis features provided additional staging benefit to the CDR plus NACC FTLD. Inclusion of these features brings us closer to optimising the rating scale for use in trials.

Indexed as

Frontotemporal DementiaPsychotic DisordersAnxietyHallucinationsHumansMental Status and Dementia TestsFRONTOTEMPORAL DEMENTIAGENETICSNEUROPSYCHIATRY

Identifiers

PMID36627201
PMCPMC10176351
OpenAlexW4314935516

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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.