Evidence map›Paper›PMID 41152189›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2025

Integrating a motor domain enhances disease severity scales in an FTD-ALS spectrum cohort.

Allison Snyder, Kiran Samra, Tianxia Wu, Lucy L Russell, Jennifer Farren, Jody Crook, Taryn Haselhuhn, Katelyn Porter, Marcell Szabo, Ariana Duckett and 8 more

Abstract read
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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

1 citing paper in PubMed.

  1. Integrating a motor domain enhances disease severity scales in an FTD-ALS spectrum cohort.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    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

18 authors.

Allison SnyderNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Kiran SamraDepartment of Neurodegenerative Disease, University College London Dementia Research Centre, London, UK.
Tianxia WuNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Lucy L RussellDepartment of Neurodegenerative Disease, University College London Dementia Research Centre, London, UK.
Jennifer FarrenNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Jody CrookNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Taryn HaselhuhnNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Katelyn PorterNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Marcell SzaboNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Ariana DuckettNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Fiona LinNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Laura DanielianNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Bryan J TraynorNational Institute on Aging, National Institutes of Health, Bethesda, Maryland, USA.
Sonja W ScholzNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Bradley F BoeveDepartment of Neurology, Mayo Clinic, Rochester, Minnesota, USA.
Howard J RosenMemory and Aging Center, Department of Neurology, University of California, San Francisco, San Francisco, California, USA.
Jonathan D RohrerDepartment of Neurodegenerative Disease, University College London Dementia Research Centre, London, UK.
Justin Y KwanNational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.

Funding

Technology and Remote Assessment CoreU19AG063911 · NIA · MAYO CLINIC ROCHESTER · PI Bradley F Boeve · 2019 to 2026
$120.9M
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
Training - The Frontotemporal Lobar Degeneration Clinical Research ConsortiumU54NS092089 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BOXER, ADAM L. · 2014 to 2018
$6.4M
NIA NIH HHS U01 AG045390NIA NIH HHS U19 AG063911NINDS NIH HHS U54 NS092089The Intramural Research Program of the National Institutes of HealthThe National Institute on Aging U01AG045390The National Institute on Aging U19AG063911The National Institute on Aging U54NS092089
6 · The paper itself

Abstract

introductionThe Genetic Frontotemporal Initiative (GENFI) and Advancing Research and Treatment in Frontotemporal Lobar Degeneration (ARTFL)-Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) Longitudinal Frontotemporal Lobar Degeneration Study (ALLFTD) consortia developed Clinical Dementia Rating (CDR)-derived scales with a motor domain to overcome systematic underestimation of disease severity by the CDR. We calculated disease severity scores using these scales in a mixed neurodegenerative cohort and correlated them with objective motor measures.

methodsThe CDR plus National Alzheimer's Coordinating Center (NACC) Frontotemporal Lobar Degeneration (FTLD), CDR + NACC FTLD-M (Motor), and Multidomain Impairment Rating (MIR) scores and motor measures were determined and correlated in 242 participants.

resultsBoth CDR + NACC FTLD-M and MIR showed increased disease severity scores and correlated with motor measures. These findings were held in 81 amyotrophic lateral sclerosis (ALS) participants and correlated with the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale. Including a motor domain required fewer study participants in a simulated clinical trial sample size calculation. DISCUSSION: With a motor domain, CDR + NACC FTLD-M and MIR improve disease severity classification and correlate with quantitative motor assessments. This addition more fully captures the extent of symptoms across the FTD-ALS spectrum and improves clinical trial efficiency. HIGHLIGHTS: CDR + NACC FTLD-M and MIR strongly correlate with objective motor measures. The enhanced scales improve disease severity classification in FTD and ALS. Greater clinical trial efficiency is achieved using these enhanced scales.

Indexed as

Amyotrophic Lateral SclerosisFrontotemporal DementiaSeverity of Illness IndexAgedCohort StudiesFemaleHumansLongitudinal StudiesMaleMiddle AgedNeuropsychological Testsdisease severityfrontotemporal dementia/amyotrophic lateral sclerosismotor impairmentoutcome measures

Identifiers

PMID41152189
PMCPMC12568369

What OpenQuestion holds

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LicenceCC BY-NC-ND
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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 OpenQuestion graph.