Setting Up a Local Registry to Improve the Care of Patients With Primary Biliary Cholangitis

Primary biliary cholangitis (PBC) is a rare but progressive chronic disease of the liver. The national guidelines aim to standardise the care of patients with PBC across the UK. The guidelines also recommend routine screening for the presence of symptoms in patients with PBC, although none suggest how such screening should be achieved in clinical practice. We aim to develop a sustainable and comprehensive local registry for patients with PBC to examine current practice and help define long-term complications and survival. Setting up the registry involves working with several workstreams to identify the data required for the registry, technical IT infrastructure to support the data collection, and a steering committee to oversee the work of the PBC registry. This registry will involve patients aged ≥18 years from the London North West University Health Trust hospitals with a diagnosis of PBC as defined by the British Society of Gastroenterology (BSG) and the European Association for the Study of the Liver (EASL) criteria. Patients will not be subjected to any additional treatments or investigations as the registry will be part of routine clinical practice.