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.


Current Studies


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)

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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).

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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.

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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).

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