Article

Exploring the content validity of the Unified Wilson Disease Rating Scale: Insights from qualitative research

2023-06-06

Abstract excerpt

<title>Abstract</title> <p><bold>Background: </bold>Wilson Disease (WD) is a rare metabolic disorder of impaired copper transport manifesting in hepatic, neurological, and psychiatric symptoms. To evaluate the clinical symptoms of WD in clinical trials, a group of clinicians created the Unified Wilson Disease Rating Scale (UWDRS). Content validity of this scale has not been established. The aim of this study was...

Topics

Open a Topic to create a Post that cites this publication.

Identifiers and source

Literature Corpus work: acd66f37-762f-57ab-a06f-b09fff44882d
DOI: 10.21203/rs.3.rs-2566240/v1

Open publication

Related research

Semantic proximity does not establish scientific evidence.

Click a neighbor to travelStep 1 · 12 closest

Exploring the content validity of the Unified Wilson Disease Rating Scale: Insights from qualitative researchDOI 10.21203/rs.3.rs-2566240/v1Read

“Because it is a rare disease…it needs to be brought to attention that there are things out of the norm”: A qualitative study of patient and physician experiences of Wilson disease diagnosis and management in the USSemantic proximity Read

Neurological Type Wilson’s Disease: Epidemiology, Clinical Manifestations, Diagnosis, and ManagementSemantic proximity Read

Quality of life in Wilson’s disease: a large prospective cross-sectional studySemantic proximity Read

Epidemiological Study on a Wilson Disease Group of PatientsSemantic proximity Read

Incorporating the Patient Perspective into Clinician-Reported Outcome (ClinRO) Content Validation and Meaningful Within-Patient Change ThresholdsSemantic proximity Read

A questionnaire-based study to comprehensively assess the status quo of rare disease patients in ChinaSemantic proximity Read

Development and validation of Gaucher disease type 1 (GD1)-specific patient-reported outcome measures (PROMs) for clinical monitoring and for clinical trialsSemantic proximity Read

Diagnostic Accuracy of Exchangeable Copper for Grading the Severity of Wilson Disease.Semantic proximity Read

Predicting Wilson’s Disease Progression using Machine Learning with Real-World Electronic Health RecordsSemantic proximity Read

Wilson's disease: does a neuropsychiatric phenotype without liver involvement truly exist?Semantic proximity Read

A Questionnaire-based Study to Comprehensively Assess the Status Quo of Rare Disease Patients and Care-givers in ChinaSemantic proximity Read

Development of a Core Outcome Set for Neurological Disorders (COS-Neuro): an AI-Assisted Thematic Framework AnalysisSemantic proximity Read