Oct 2025 Research Roundup
Research Roundup
October 2025
You might wonder what we get up to when we attend big events like the British Association for the Study of the Liver (BASL) conference. Simply put, we are there to fly the PSC flag: to raise awareness, build relationships with healthcare professionals and researchers,, and make sure that the patient voice is impossible to ignore.
Here's a look at what Mark Chatterley and I learned and achieved at the recent conference and our own Information Day.
Mark's Story: The Talk That Changed Practice
The most powerful moment of the conference came when Mark Chatterley shared his personal story. The response from the audience of clinicians and researchers was incredible.
He received compliments calling it the ‘Best presentation of BASL’, and, crucially, several leading doctors said that hearing his experience would immediately change how they treat their patients. This proves that sharing our personal experiences is an effective way to improve care.
Sharing Resources and Meeting Experts
At our stand, we made sure we weren't just handing out leaflets. We used a clever digital tool that allowed doctors to instantly receive an email with links to all our online resources the moment they scanned their badge. It was a brilliant way to guarantee they walked away with PSC information for their patients.
We also spent time talking to leading doctors and researchers. Did you catch the recordings on our social media channels?
We got a commitment from the body that oversees liver transplants, NHSBT, to provide us with crucial PSC transplant statistics. This will help us advocate for better services.
We talked to a wonderful social worker called Nicholas Park from the Royal Free Hospital who supports young people with PSC in all sorts of ways from claiming benefits, navigating alcohol and taking control of their health.
We met the new PSC specialist from Addenbrooke's Hospital, Dr Rachel Smith.
Networking Works: It was clear that our team's combined efforts are working; clinicians were specifically coming up to Mark and I to continue conversations started months ago. We are steadily widening our reach together and this means that more people are talking about PSC.
Bringing it Home to the Community
On the final day, our efforts at the professional conference set the stage for our Information Day, where we connect all that hard work back to our community.
It was our first Information Day in Northern Ireland and attendees said it was a long time coming. It was such a pleasure to meet new people for the first time, and meet others we’ve known for years on our Facebook group.
We left the conference and Information Day with a clear path forward, a stronger network of committed professionals, and confirmation that your stories truly are the most powerful tool we have.
The Future of PSC Treatment: What We Learned from Experts
We had the privilege of listening to leading experts discuss the latest PSC, inflammatory bowel disease (IBD), and liver care. The goal of the BASL conference is to educate the scientific and medical community about the latest developments in liver disease research and care.
For the first time, we saw PSC highlighted in presentations over several days. The major theme? The future of PSC care is likely to involve multiple, targeted therapies and there will be a greater focus on proactive symptom control and early diagnosis.
Here are the key takeaways from the lectures:
PSC Treatments Are Evolving
The search for an effective medical treatment is far from over. Professor Michael Trauner predicted that the future will require a combination of therapies for PSC, not a single cure.
- NCA is Promising: The bile acid-based therapy, NCA, has produced the first positive Phase 3 clinical trial result(announced in May 2025), offering real hope in a therapeutic area that has seen little success beyond UDCA.
- Microbiome Focus: Despite the positive NCA results (announced in May), the quest for an effective treatment isn’t over yet. As well as bile acid therapies, there's interest in treatments targeting microorganisms in the bowel (the gut microbiome) such as the antibiotic ‘vancomycin’, and diet changes, though we still need properly designed studies to confirm their benefits.
Managing PSC and IBD
Managing liver and bowel diseases together requires close teamwork and vigilance:
- IBD is a Risk: Dr Richard Howard (Antrim) stressed the importance of controlling IBD well, especially in people with PSC. He warned clinicians in the audience to have a high index of suspicion when treating IBD patients. When someone has both conditions, management must be a joint effort between liver and bowel specialists.
- Optimising Nutrition in PSC/IBD: Dietitian, Briege McCue, (Belfast) explained that nutrition is more than just feeling better. Good nutrition can improve mobility, increase muscle mass, and improve outcomes after a liver transplant.
IBD Drug Challenges: Professor Glen Doherty (Dublin), gave a lecture about treatment options for patients with IBD and liver disease before and after liver transplant. He noted that choosing the right therapy for moderate to severe IBD is difficult, especially since many clinical trials exclude patients who have severe IBD or who have had transplants, limiting evidence on their use. He also noted that cost can drive treatment decisions.
Recurrent PSC (rPSC)
Dr Deepak Joshi discussed that PSC can unfortunately return (rPSC) in about a quarter of people with PSC, typically around 4.6 years after transplant. Factors that are associated with rPSC include having poorly controlled IBD. He emphasised that clinicians need to be better at describing PSC types (phenotypes) because outcomes are different between different groups. An example is small duct PSC, which is associated with better outcomes than ‘classical’ PSC (which affects the large ducts.
Surveillance
Dr Omar ElSherif (Dublin) advocated for colonoscopies that use high-definition imaging and dyes for people with PSC-IBD. He highlighted that surveillance improves survival, and new emerging biomarkers for bile duct cancer (CCA) seem to outperform older tests like CA19-9.
Addressing Fatigue
Fatigue is one of the most persistent, life-altering symptoms for people with PSC. Alice Freer* and Professor Dave Jones brought it into focus for another disease of the bile ducts called PBC. Their presentation resonated with us so strongly, it could easily have been about PSC. They urged clinicians to always ask about symptoms like fatigue as it is often under-recognised, despite affecting multiple aspects of life. They suggested using standard assessment tools to measure fatigue.
*PSC Support is funding Alice Freer's Research Training Fellowship to help us understand fatigue in PSC so that we can treat it effectively.
The presence of so many PSC-related talks at BASL this year meant that attendees (healthcare professionals) had the chance to learn about our rare disease. The clear message from all these sessions is that while PSC presents complex challenges, the future of our care is moving toward more precise monitoring, better supportive care that acknowledges and tackles symptoms and promising treatments in clinical trials.
Do drop me an email if you have any questions:
Martine Walmsley
PSC Support Head of Research Strategy
ERN RARE-LIVER Management Board and PSC Working Group Co-Lead