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.
Bile Duct Cancer and PSC
10-15 min survey about your views on cancer monitoring and tests
Open to: anyone 18 or over affected by PSC
Please do this survey in the PSC Partners Registry if you are a member.
Diet and PSC
Does what you eat make a difference to how you feel? Tell researchers in Sweden who are developing information and research studies on this topic.
Cholangitis Attacks
It can be hard to tell if you’re having an attack but once you’ve had one, you certainly remember it. Please help us define an attack to help improve care.
Please do this survey in the PSC Partners Registry if you are a member.
Top Ten PSC Issues
A quick survey to find out the top ten issues for people affected by PSC.
Open to everyone!
Patient Insights Report
Published May 2020
Part 1 - PSC Healthcare
Patient Insights Report
Published Aug 2020
Part 2 - PSC Clinical Trials
Clinical Trial to Test Bezafibrate in PSC
Full report coming soon
Studies to Modify Gut Bacteria in PSC?
Full report coming soon
Research and Treatment Surveys
March 2016