Research to understand PSC or find an effective treatment comes in all shapes and sizes, ranging from completing surveys from home to testing new drugs. You can apply to take part but they often have short time periods for this. Keep an eye on this page and in our Research Bulletins so you don't miss out on new opportunities.
What should I consider before taking part?
Before you take part in any research, you should find out as much as you can about the trial before making a decision. Some studies are short and involve only filling in a questionnaire or talking about having PSC. Others take place in hospitals and involve taking new drugs being tested in the hope that they benefit people with PSC.
It's perfectly acceptable (and encouraged!) to ask questions about anything you don't fully understand. There is no pressure to take part in any research and you should always be able to back out at any time, without giving a reason.
Often researchers will ask you if they can share anonymised data from the trial. We encourage them to ask this because sharing data can help future researchers avoid wasting time doing duplicate work, and allow them to build on the information gained from the study you were in.
Research studies normally have strict eligibility criteria, with good reason, meaning you won't automatically be eligible to take part in some clinical trials. Eligibility is one of the first things the researchers check.
The National Institute for Health Research has a dedicated website called Be Part of Research to help you understand what's involved in taking part in research which is well worth a look.
Taking part in a clinical trial: patient perspective
Many thanks to Gareth for sharing his experience of taking part in research.
"PSC already takes so much away from us. Usually we are having to react to changing symptoms or worsening of the condition, but by signing up for a clinical trial, we are taking back some of that control."
Each section below shows a different research study. Check out the details to see if one might suit you.
The map below shows which centres are recruiting for the following clinical trials:
- Cilofexor (updated 9 February 2020)
Important: your own hospital might be conducting its own PSC research or recruiting for UK-PSC (see above), and some studies are 'online' with no specific centre, and so do not appear on our map.
Research Update (December 2018) Dr Douglas Thorburn
Watch Dr Thorburn's talk on PSC research at our 2018 London PSC Information Day: