Evidence map›Paper›PMID 40692327›Full record

ArticleJournal of Huntington's disease2025

Reliability and validity of the Huntington's Disease Everyday Functioning (Hi-DEF): A patient-reported measure of cognitive capacity on daily functioning in Huntington's disease.

Jennifer Petrillo, Ruta Sawant, Rebecca Rogers, Sophie Cleanthous, Stefan Cano, Rajeev Kumar, Jennifer Klapper, Luis A Sierra, Jee Bang, Karen Elta Anderson and 6 more

Abstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of Huntington's disease, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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1 · What the graph read from it

What it found

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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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

16 authors.

Jennifer PetrilloSage Therapeutics, Inc., Cambridge, MA, USA.ORCID 0000-0001-8441-2157
Ruta SawantSage Therapeutics, Inc., Cambridge, MA, USA.
Rebecca RogersModus Outcomes, a Division of THREAD, Cambridge, MA, USA.ORCID 0009-0000-0140-7820
Sophie CleanthousModus Outcomes, a Division of THREAD, Cambridge, MA, USA.
Stefan CanoModus Outcomes, a Division of THREAD, Cambridge, MA, USA.ORCID 0000-0001-9390-273X
Rajeev KumarRocky Mountain Movement Disorders, Englewood, CO, USA.
Jennifer KlapperUniversity of Pennsylvania Huntington's Disease Center, Philadelphia, PA, USA.ORCID 0009-0004-4943-1773
Luis A SierraBeth Israel Deaconess Medical Center, Clinical Research Trials Excellence in Neurology (CORTEX), Boston, MA, USA.ORCID 0000-0002-1932-5556
Jee BangJohns Hopkins Medicine, Neurology, Baltimore, MD, USA.
Karen Elta AndersonGeorgetown University, Department of Psychiatry & Department of Neurology, Washington, DC, USA.ORCID 0000-0002-2084-6869
Deborah A HallRush University, Department of Neurological Sciences, Chicago, IL, USA.
Susan PerlmanUniversity of California, Los Angeles, Department of Neurology, Los Angeles, CA, USA.
Henry MooreUniversity of Miami, Department of Neurology, Movement Disorders Division, Miami, FL, USA.ORCID 0000-0002-4398-5001
Danny BegaNorthwestern Medicine, Neurology (Movement Disorders), Chicago, IL, USA.
Jason JohannesenSage Therapeutics, Inc., Cambridge, MA, USA.ORCID 0000-0002-7049-4873
Emma ElliottModus Outcomes, a Division of THREAD, Cambridge, MA, USA.ORCID 0000-0002-4323-9308

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

BackgroundThe Huntington's Disease (HD) Everyday Functioning (Hi-DEF) is a novel patient-reported outcome (PRO) scale developed to assess the impact of cognitive impairment on daily functioning in early HD patients.ObjectiveTo examine the psychometric properties, including reliability and validity, of the Hi-DEF. Findings from psychometric analyses using classical test theory (CTT) approach are presented here.MethodsA non-interventional validation study was conducted across nine HD Centers of Excellence across the US.ResultsPatients with HD (n = 151) were recruited: 59% were female, mean (SD) age was 47 (12) years, and mean (range) Total Functional Capacity (TFC) score was 11.4 (8-13). Excellent internal consistency reliability was observed for the Hi-DEF scale total score (Cronbach's alpha: 0.98) and across subscales (alpha range 0.87-0.96). Most targeting and scaling assumptions were met, although there were ceiling effects for three subscales. Construct validity was demonstrated by moderate to high Spearman's rank-order correlations with TFC scores (range r = -0.38 to -0.62) and known and validated measures such as the HD-PRO-TRIAD

Indexed as

Activities of Daily LivingCognitive DysfunctionHuntington DiseasePatient Reported Outcome MeasuresAdultAgedFemaleHumansMaleMiddle AgedNeuropsychological TestsPsychometricsReproducibility of Resultsactivities of daily livingexecutive functionHuntington's diseasepsychometricsreliabilityvalidity

Identifiers

PMID40692327
PMCPMC12602719

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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.