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

Launched by QUEEN MARY UNIVERSITY OF LONDON · Nov 22, 2021

Keywords

ClinConnect Summary

This clinical trial is aimed at creating and testing a new questionnaire called the CARD-SARC, which will help measure the quality of life for patients with cardiac sarcoidosis, a condition where clusters of inflammatory cells affect the heart. The trial has two main parts: first, researchers will develop the CARD-SARC questionnaire, and then they will evaluate how well it works to track changes in patients’ quality of life over time.

To participate in this study, you need to be an adult aged 18 or older and have a diagnosis of cardiac sarcoidosis that is confirmed by a team of specialists. Participants will be recruited from outpatient clinics at specialized centers. If you join the trial, you will be asked to complete the questionnaire, which is designed to be straightforward. It's important to note that you should be able to understand and communicate in English to participate. This research could ultimately help improve how we understand and support patients living with cardiac sarcoidosis.

Gender

ALL

Eligibility criteria

• 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