CompletedNot Applicable

Development and Validation of a Health-related Quality of Life Tool for Patients With Cardiac Sarcoidosis

United Kingdom130 participantsStarted 2021-11-11

Plain-language summary

What is the purpose of this research? This study includes two parts based in two NHS specialist centres for cardiac sarcoidosis: * Development of the CARD-SARC: Development of the new questionnaire to measure quality of life in cardiac sarcoidosis patients (the CARD-SARC questionnaire) * Validation of the CARD-SARC: Evaluation of how good the CARD-SARC questionnaire is at measuring quality of life changes in patients with cardiac sarcoidosis.

Who can participate

Age range18 Years – 120 Years

SexALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Adult (≥ 18 years) * Patients with a probable (50-90% likelihood) or highly probable (\>90% likelihood) diagnosis of cardiac sarcoidosis (CS) by a multidisciplinary team meeting in a CS-specialist centre as per the WASOG criteria * Patients attending outpatient clinics in a CS-specialist centre Exclusion Criteria: * Unable or unwilling to give informed consent * Unable or unwilling to give and/or complete the study questionnaires • Inability to understand written and/or verbal English

What they're measuring

To develop and validate a disease-specific HRQoL tool (CARD-SARC) for people diagnosed with cardiac sarcoidosis.

Timeframe: 12 months

Trial details

NCT IDNCT05145023

SponsorQueen Mary University of London

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2025-12-31

View on ClinicalTrials.gov More Cardiac Sarcoidosis trials