Characterisation of Patients With Primary Biliary Cholangitis in Austria - A Prospective Registry and Biobank

What this Trial Is About

Researchers are conducting a prospective, multicenter registry to better understand primary biliary cholangitis (PBC), including how it progresses over time, the role of disease-related biomarkers, complications, and symptom burden. Patients with PBC treated at participating centers in Austria will be invited to join the registry, which is managed by the Medical University of Vienna. The registry aims to collect detailed epidemiologic, clinical, and laboratory data to characterize patients across different stages of this liver disease. Participants will be followed through regular clinic visits, generally every 3 to 6 months, with data collected both retrospectively and prospectively. No study-specific treatments or interventions are administered; patients continue their usual care under current treatment guidelines. Optional participation includes contributing biological samples such as blood and liver tissue to a biobank for future research. Data and samples are pseudonymized to protect patient identity. During the study, clinical and laboratory data will be recorded, including assessments of liver disease complications, liver and spleen stiffness, and portal hypertension severity based on imaging and pressure measurements when available. Researchers will track transplant-free survival over an average of 5 years. Patients may withdraw from the registry or biobank at any time. Data security measures ensure restricted access and encrypted data transfer throughout the study period, which extends until December 2040.

Austrian PBC Registry