Our current surveys

We're working hard to help researchers find an effective treatment for PSC as soon as possible, and to help improve healthcare services for people with PSC.

We occasionally run surveys to find out your views on various topics, from your experiences of PSC, your healthcare to your views and appetite for research. Why?  We MUST back up the claims  we make about the needs of people with PSC with evidence. Your views are helping us do that. Together, we can make a difference.

Keep an eye on this page for new surveys and polls. 5 minutes spent on a survey now could mean a lifetime of difference in the future.

Thank you.

Current Surveys

Top TenPSC Issues

A quick survey to find out the top ten issues for people affected by PSC.

Open to: everyone!

Social Distancing/ Shielding and You

It's a challenging time for the whole country at the moment and even more so for people affected by PSC, with many of us having to stay at home for the next few weeks. We'd love to hear how you're doing and share your experiences and tips on getting through this with others.

Open to: everyone! We're all in this together!

European Healthcare Survey

ERN Rare Liver, a network of rare liver disease specialist hospitals across Europe, is asking for people with PSC to complete a new short survey about your quality of life and healthcare.

The survey is in English but the language can be changed by clicking in the right-hand side panel under 'Languages'.

The closing date is 31 May 2020.

Open to: patients

Survey Results and Reports


2019 Research Survey

September 2019

Part 1 - available now

Part 2 - coming soon

Clinical Trial to Test Bezafibrate in PSC

Full report coming soon

Studies to Modify Gut Bacteria in PSC?

Full report coming soon

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What we do

Improving the lives of people affected by PSC