Swiss Study on Primary Biliary Cholangitis Tracking Disease Progress and Treatment Outcomes

What this Trial Is About

This research project involves collecting biological samples and health-related medical data to study Primary Biliary Cholangitis PBC, a rare liver disease. It aims to gather high-quality prospective data to better understand the diseases epidemiology, natural history, treatment response, and outcomes. The study also plans to use already existing coded medical data for further research and will collaborate with international PBC reference networks. Participants will have an enrollment visit and at least one follow-up visit annually. Each year, a blood sample will be collected for biobanking. When available and collected during routine clinical care, liver tissue samples may also be obtained. These procedures support ongoing research into various scientific questions about PBC. During the study, researchers will monitor disease progression, features, treatment responses, overall survival, and transplantation-free survival over three years. Participants health data and biological samples will be used to explore these outcomes. The total participation duration includes initial enrollment and yearly follow-ups, allowing for long-term observation and data collection.

Swiss Primary Biliary Cholangitis Cohort Study