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Setting Up a Local Registry to Improve the Care of Patients With Primary Biliary Cholangitis
Laith Alrubaiy1, Ceyhun A Oztumer2
1Gastroenterology, St. Mark's Hospital, London, GBR.
Insights
This study establishes a new registry for primary biliary cholangitis (PBC) patients in the UK. The registry aims to improve care by tracking symptoms and long-term outcomes for this chronic liver disease.
Area of Science:
- Hepatology
- Clinical Research
- Data Science
Background:
- Primary biliary cholangitis (PBC) is a rare, progressive chronic liver disease.
- UK national guidelines recommend symptom screening for PBC patients.
- Current clinical practice lacks standardized methods for PBC symptom screening.
Purpose of the Study:
- To develop a sustainable, comprehensive local registry for PBC patients.
- To examine current clinical practices in PBC management.
- To define long-term complications and survival rates in PBC.
Main Methods:
- Establishing a registry involving multiple workstreams: data identification, IT infrastructure, and a steering committee.
- Inclusion criteria: patients aged ≥18 years diagnosed with PBC at London North West University Health Trust hospitals.
- Utilizing British Society of Gastroenterology (BSG) and European Association for the Study of the Liver (EASL) diagnostic criteria.
- Registry integrated into routine clinical practice, without additional patient treatments or investigations.
Main Results:
- The registry framework is established, involving data requirements, technical infrastructure, and governance.
- Patient recruitment criteria defined based on age and diagnostic standards.
- The registry will collect data as part of routine care.
Conclusions:
- The developed registry provides a foundation for standardized PBC care and research in the UK.
- This initiative will facilitate the examination of current practices and the understanding of long-term PBC outcomes.
- The registry is designed for sustainability and integration into routine healthcare.
Abstract:
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.
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