Improving life with PSC
PSC affects every aspect of our lives, from dealing with day-to-day symptoms, worries about the future, to navigating the healthcare system. Collectively, we can make a difference.
The first step to improving life with PSC is to clearly tell our story and explain what we need.
The PSC Wellbeing Study
Researchers at the Tavistock & Portman NHS Foundation Trust are investigating the impact of PSC on mental health and wellbeing with the aim of developing a framework that will help people affected by PSC get the psychological support they need. (Stage 1 fully recruited Aug/Sep 2018)
Your experience of PSC and healthcare
Researchers at the University of Birmingham (supervised by Professor Gideon Hirschfield) are looking for people with PSC. Not recruiting at the moment (Aug 2018).
Measuring Quality of Life in PSC
We are developing a measure to assess the quality of life of people living with Primary Sclerosing Cholangitis (PSC), under the supervision of Dr Douglas Thorburn and academics at University College London. Phase 2 now recruiting.
Your experience of IBD after liver transplantation
Can you help design a questionnaire for people with PSC to assess the patient experience of colitis control after liver transplantation? UK-PSC researchers are looking for volunteers to help get this important survey right. You can feedback now (Nov 2017).