PSC Support is delighted to announce that we have awarded £20,000 to Dr Palak Trivedi (University of Birmingham) for the PSC600 Study, a UK-PSC initiative.
600 patients followed over 5 years
The PSC600 will study annual blood samples from 600 patients already registered in the UK-PSC biobank for up to 5 years. In addition, newly registered UK-PSC biobank patients will be approached to take part. Data from the blood samples will be compared to information from health records including changes in symptoms, phenotypic variation, IBD and liver disease activity, and routine test results.
Martine Walmsley, Chair of Trustees for PSC Support, said, "PSC600 has the potential to be a goldmine of PSC information, critical if we are to crack this disease. Already the UK-PSC registry has over 2,300 UK PSC patients registered, and their health information and blood/saliva samples have helped advance in our PSC knowledge, especially our understanding of genetics and factors that influence disease progression.
"But we need richer information. We hope that collecting a combination of health data and biological samples over time will enable us to properly understand which biological markers are important in PSC. We urgently need robust biomarkers to measure disease progression, and in research, to truly measure what drugs and interventions are doing.
"Including quality of life measures will also allow us to look for biomarkers that relate to how patients feel and function, because currently there is a real disconnect between laboratory parameters and the lived experience of PSC."
Understand the true value and use of PSC biomarkers
This unique data will allow us to understand the true value and use of a range of biomarkers, and ultimately boost research to find treatments and efforts to improve clinical care for people with PSC.
Valuable future resource
Importantly, the valuable data will also be made available to future researchers to build on this work (subject to approval by the UK PSC steering committee). It will be an invaluable resource for prospective biomarker discovery (and validation) across multiple other platforms; including those that relate to immune cell function and migration, liver fibrosis, and proteomic / metabolic technologies that facilitate early cancer detection.
UK-PSC was set up in 2009 as a UK PSC genetics study with PSC Support funding. PSC Support is also part of the UK-PSC steering committee, demonstrating a commitment to patient collaboration.
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 Chair of UK-PSC and Dr Palak Trivedi (University of Birmingham) is Chief Investigator.
For information about UK-PSC and to register with the UK-PSC biobank if you are a patient, check out 'Give a Blood Sample'.