February 2026 Research Roundup
February has been a month of significant transition and progress for us at PSC Support. We are now operating under the joint leadership of myself and Mark Chatterley. This change allows us to refine our strategic objectives, ensuring that every donation we receive focuses on work with the most significant impact.
Bridging the Gap in Symptom Research
In research, we’ve seen the publication of a major multinational survey in Hepatology Communications regarding the impact of cholestatic pruritus, also known as itch. The results highlighted a significant treatment gap: 75% of patients received only partial or no relief from their itch despite trying multiple medications.
This underscores why our mission to find new a treatment and better symptom management is so vital. Remarkably, patients in the UK provided over half of the global responses, truly placing our community at the forefront of research.
This month, we reported on results published in Nature Medicine establishing a link between Epstein-Barr virus (EBV) infection and the development of PSC.
World Cholangiocarcinoma Day
World Cholangiocarcinoma (CCA) Day on teh 19th served as a focal point for our work in cancer detection and prevention. People with PSC live with a higher risk of developing bile duct cancer, which is difficult to detect because it often mimics the symptoms of PSC. Understandably, this is a major worry for people with PSC.
We are tackling this challenge in four ways:
- supporting the Asp-PSC clinical trial to investigate if aspirin can prevent cancer;
- developing new transplant options for patients with PSC and CCA; Mark took part in a webinar this month explaining what's involved, hosted by AMMF - watch here.
- commercialising promising tests; and
- funding diverse research aimed at early detection.
Advancing Early Detection through Mission 2030
Early cancer detection remains a central pillar of our Mission 2030 strategy. We are pleased to share that Dr Rodrigo Motta and his team at the University of Oxford have completed a critical phase of sample collection for their DNA methylation study. By collecting 100 plasma samples across five distinct patient groups, he can now move to the analysis phase.
Dr Motta is using modern technology to identify early signs of bile duct cancer from small blood volumes. This non-invasive method is highly sensitive, and our ultimate goal is to develop a reliable blood test to screen for complications much earlier.
Setting New Standards for Clinical Care
With new tests and treatments are on the horizon, we must ensure our health systems are set up and ready to deliver them.
Thanks to one of our research volunteers, Becki, we are collaborating with experts to raise standards in PSC care, ensuring you get the right care at the right time.
Furthermore, we’ve joined the national steering committee to update the UK PSC Care Guidelines led by Dr Palak Trivedi (University of Birmingham). By participating once again, we ensure that medical standards continue to be shaped by your lived experiences and needs.
We are also seeing great strides in clinical liver care. Medway NHS Foundation Trust has become the twentieth service in the UK to achieve Improving Quality in Liver Services (IQILS) accreditation, confirming they provide high-quality, coordinated care through a multidisciplinary team. Congratulations to the Medway team!
Global Advocacy and Community Empowerment
Our impact is growing internationally. This month I attended the European Reference Network (ERN) members meeting in Prague as a Board Member of ERN RARE-LIVER and Co-Lead of PSC Working Group. The PSC Working Group is actively working on improving care across Europe and empowering patients with information and resources about PSC in mutiple languages.
Rare Disease Day 2026
For Rare Disease Day 2026, I joined PSC Partners and Fortrea to discuss PSC research and how our two organisations are collaborating and advocating for faster, smarter research.
Finally, our community remains our greatest strength. Our Patient Panel has grown to 55 volunteers, ensuring diverse experiences shape our future. If you’re a member - thank you!
Do drop me an email if you have any questions:
Martine Walmsley
PSC Support Head of Research and Policy
ERN RARE-LIVER Management Board and PSC Working Group Co-Lead
