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)
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.
Measuring Quality of Life After Liver Transplant
We are supporting the British Liver Transplant Group who are developing a measure to assess the quality of life of people who have had liver transplants. (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).