Real-World PBC patient pathways in South East England
Research type
Research Study
Full title
A feasibility study in characterising real world linkage between primary to secondary care in South East England – a model to understand the natural history, management and clinical pathways in the care of the Primary Biliary Cholangitis (PBC) patient
IRAS ID
219826
Contact name
Marinos Pericleous
Contact email
Sponsor organisation
Royal Surrey County Hospital
Duration of Study in the UK
1 years, 7 months, 18 days
Research summary
Primary biliary cholangitis (PBC) (ICD-19 K74.3) is an example of an important rare liver disease and is described as a model autoimmune condition. Studying rare liver diseases is challenging and case-finding is limited due to the low prevalence of the disease. There is paucity of real-world data on PBC mainly due to lack of awareness around this disease as well as due to fragmentation of data on patients with this rare condition. Currently, the availability of this information is held in different hospitals, GP surgeries and clinical laboratories. We strongly believe that triangulating information from primary care, clinical laboratories and secondary care will provide an accurate real-world picture of the burden of PBC in the region and overcome the limitations recognised in the data collected by the UK-PBC consortium. The rationale of this feasibility study is to provide a detailed insight of the impact of PBC in the region whilst taking into account the hypothesised differences in demographics when compared to the northeast and Scottish cohorts which have already been described in the literature. With this study we will be able to understand the natural history of the disease and elucidate clinical pathways especially when patients transition between services.
REC name
London - Surrey Research Ethics Committee
REC reference
16/LO/2145
Date of REC Opinion
18 Jan 2017
REC opinion
Further Information Favourable Opinion