Evidence map›Paper›PMID 40327161›Full record

ArticleJournal of patient-reported outcomes2025

Internal consistency, construct validity, and responsiveness of the MRC Prion Disease Rating Scale.

Leah Leidy, Aaron Yarlas, Robert S Pulido, Jessica Ludwig, Kathleen Glisic, Brian S Appleby

Abstract readValidation Study
In one paragraph

Article in Journal of patient-reported outcomes, 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. 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

6 authors.

Leah LeidyDepartment of Pathology, Case Western Reserve University/University Hospitals Cleveland Medical Center, Cleveland, OH, USA. lleidy2023@health.fau.edu.ORCID http://orcid.org/0009-0000-2015-868X
Aaron YarlasIonis, Carlsbad, CA, USA.
Robert S PulidoIonis, Carlsbad, CA, USA.
Jessica LudwigDepartment of Pathology, Case Western Reserve University/University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
Kathleen GlisicDepartment of Pathology, Case Western Reserve University/University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
Brian S ApplebyDepartments of Neurology and Psychiatry, Case Western Reserve University/University Hospitals Cleveland Medical Center, Cleveland, OH, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe Medical Research Council-Prion Disease Rating Scale (MRC-PDRS) is a 20-point clinician-reported outcome scale to assess disease progression in patients with prion disease, an invariably fatal neurodegenerative disease caused by misfolded prion protein. This study aims to evaluate the measurement properties and interpretability of the MRC-PDRS to support the measure's use for effective disease management and research evaluating effectiveness of treatment options for prion diseases. METHODOLOGY: Utilizing patient data from the Telemedicine Assessment Program for CJD (TAPCJD), statistical assessment was conducted of internal consistency, construct validity (including convergent, divergent validity, and known-groups discriminant validity), responsiveness, and interpretation guidelines using distribution-based approaches to estimate thresholds indicating minimal important change (MIC) in MRC-PDRS scores. Criterion measures used for evaluating construct validity and responsiveness included the Telephone Interview for Cognitive Status (TICS) and Neuropsychiatric Inventory-Questionnaire (NPI-Q). RESULTS/

conclusionsThese findings provide strong preliminary evidence that the MRC-PDRS is reliable, valid, and responsive as a tool for measuring disease progression in patients with prion disease, with preliminary MIC estimates ranging from 1 to 3 points. This supports the use of MRC-PDRS in evaluating potential treatment benefits of prion disease clinical trials, and potentially in clinical practice settings.

Indexed as

Creutzfeldt-Jakob SyndromePatient Reported Outcome MeasuresPrion DiseasesAdultAgedDisease ProgressionFemaleHumansMaleMiddle AgedReproducibility of ResultsSeverity of Illness IndexSurveys and QuestionnairesTelemedicineCreutzfeldt-Jakob diseaseMRC Prion Disease Rating ScalePrion diseasePsychometric validation

Identifiers

PMID40327161
PMCPMC12055732

What OpenQuestion holds

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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.