UK-PBC began in 2007 as a national effort to establish a large cohort of high-throughput genetic studies.
Since 2008 the project has continually evolved and now has a major focus on UNDERSTANDING THE NATURE OF RISK IN PBC, taking that increased understanding and using it to DEVELOP AND EVALUATE BETTER APPROACHES TO TREATMENT and then, IMPLEMENTING BETTER CARE IN PRACTICE
UK-PBC is a partnership between the academic and clinical communities, patients and patient groups and industry. We believe that this partnership has been integral to our success.
Our work would not have been possible without the support of the Medical Research Council, Wellcome Trust, National Institute for Health Research and industry partners.
Our research programme consists of three workstrand areas which are fully complementary:
Workstrand 1 – Recruitment, Phenotyping and Disease Stratification
This workstrand has been responsible for developing and maintaining the unique UK-PBC cohort that underpins all our work. UK-PBC currently has over 8000 patient participants across the UK, with over 400 in a deeply phenotyped nested cohort.
Workstrand 2 – Mechanisms of Risk in PBC/UDCA Non-Response
This workstrand represents our clinical science programme. Initially focused on understanding the mechanisms of UDCA non-response the programme has now broadened out to address all aspects of enhanced risk. The workstrand identified both new candidate therapies for stratified intervention in PBC and novel (and now patented) peripheral blood risk biomarkers.
Workstrand 3 – Trials Platform and the User Interface
This workstrand builds on the other two, applying novel understanding of disease mechanisms to new approaches to trial intervention, delivered using the UK-PBC cohort and investigator network. UK-PBC has made the UK a world-leading location for successful trial development and delivery in PBC utilising the networks to ensure effective and timely recruitment. This workstrand also hosts the patient and clinician education programmes, the national guideline development group and the UK-PBC national audit (now ongoing) which will be integral to ensuring that new knowledge is translated into better practice.