What is UK-PSC?
UK-PSC is a research group of leading PSC researchers and specialists working to better understand PSC
The UK-PSC registry was set up in 2009 as a UK-PSC genetics study with PSC Support funding, and is now one of the largest PSC registries in the world, with over 2,000 patients. Patients are at the heart of UK-PSC, and PSC Support actively collaborates as part of the UK-PSC steering committee.
UK-PSC became part of the NIHR Rare Disease Research collaboration in April 2015 and expanded its scope to include PSC patients of all ages.
Professor Douglas Thorburn, Royal Free Hospital (London) is the Chair of the UK-PSC consortium, and Dr Palak Trivedi (University of Birmingham) is Chief Investigator.
What does UK-PSC do?
The UK-PSC registry information will help us to:
- improve our basic understanding of PSC
- establish better, shorter term end points for trials (than 'death' or 'transplantation')
- establish the different subtypes of PSC and their causes/mechanisms. It is hoped that in doing this we will be able to identify specific cohorts of patients ready for trials, so that the trials can be targeted at well-evaluated, specific groups rather than across the whole range of the PSC population:
- Do younger PSC patients (under 25 years) have a more inflammatory type of PSC?
- Those at higher risk of developing cancer. Is there genetic component in developing cancers with PSC?
- Is there a subgroup of small duct PSC with a better prognosis? Is it a different disease or simply early stage 'classical PSC'?
- Is PSC with IBD different to PSC without IBD?
- How are patients with elevated IgG4 levels compared to those with classical PSC?
Join the UK-PSC registry
Give a biological sample
Over 2,500 UK PSC patients are registered and our results have been combined with those collected internationally via the International PSC Study Group. In December 2014, we secured funding to build on the DNA work to create a UK-PSC Biobank. UK-PSC will conduct more detailed phenotyping and biobanking, so that we are not just taking one sample of cells, but we are also including urine, faeces and samples taken from colonoscopies and ERCPs.
UK-PSC accepts patients of all ages nationally. This will allow us to do better research, answer some of our questions and allow patients in the UK to get very early access to new treatments. If you are a patient, and have not yet provided your sample, or you are not sure, please e-mail the UK-PSC team. Please also contact the team if you have changed any of your contact details. Note, the team is part-time, you may not always get an immediate response.