First of all, I’m delighted to announce that Maria Richardson is now regularly volunteering to support PSC Support's research work. Welcome on board, Maria!

 

Apply for research funding

If you are a PSC researcher, apply for a grant from PSC Support! We’re inviting Letters of Intent until 24 March 2025 for project and seed-funding grants.

 

Research we're funding

This month we announced the first three of eight new research projects your donations are funding:

• Dr Ghada Nouairia from the Karolinska Institute in Sweden is using the latest technologies and advanced machine learning methods to help pinpoint potential new targets for PSC treatments.
• Dr James Sun from the Francis Crick Institute is using 3D modelling to understand exactly what part genetic changes in cells play in the development of PSC. We hope that his early results will lay the foundations for larger scale research in this important area.
• Dr Chandni Radia from King’s College Hospital is developing evidence-based guidance on how often people with PSC-IBD should have colonoscopies. Surprisingly, there’s not much evidence to support the recommendation that we should have them every year and it is likely that some people should have them more often and others less often than once a year.

 

 

Get involved in research

Our Patient Panel members have been busy helping Ryan James prepare for the next stage of our Quality of Life research. Watch out for invitations to take part once he starts recruiting. His goal is to take the provisional questionnaire developed by Elena Marcus and test it on more people in the UK and other countries. If you are interested in getting involved in future research planning, please let us know here; we'd love to hear from you.

 

 

YOUR questions

In this week’s live Ask the Expert webinar, I talked to the researchers behind the Asp-PSC Study. This is a clinical trial to understand if aspirin helps reduce cancer risk in PSC. There are over 20 hospitals around the UK looking for volunteers for Asp-PSC. We'll publish the recording of this webinar on our YouTube channel within the next week or so.

 

 

OUR questions

If you’ve ever wondered if what you eat might have an affect on your symptoms, or you simply wish there was more specific information about diet for PSC, please take 10 minutes to let researchers at the Karolinska Institute in Sweden know. The responses could really help guide new diet research and advice for us all.

 

 

And finally, let’s talk about clinical trials!

There are currently four clinical trials looking for volunteers in the UK right now. Every PSC doctor should think about clinical trials for patients, but it isn’t happening. If you are interested in taking part in research, be proactive and check out our studies list.

 

If you have itch, you might be interested in the VISTAS trial testing a new drug to combat itch in PSC.

 

We heard last week that, following positive results from last year’s SPRING trial, Chemomab Therapeutics is now planning a larger trial to assess their drug as a treatment for PSC. Each of the trials is addressing a different aspect of PSC, so it is encouraging to see them moving forward.

 

Talking of moving forward, there is great interest in vancomycin for PSC because some (not all) people have had success with it yet it is difficult to get. Why? There isn’t enough robust research to show how and how it helps safely, and it is not licensed for PSC in the UK. We are starting to see how it helps to reduce inflammatory bowel disease activity in PSC. We contributed to this publication and there is a helpful summary on the University of Birmingham website.

 

On another positive note, we have begun work with researchers to plan a trial to test vancomycin’s effect on PSC. Our goal is to generate the necessary evidence to properly support its use (or not, depending on the results).

 

Do drop me an email if you have any questions:

Martine Walmsley, PSC Support Head of Research Strategy martine@pscsupport.org.uk