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March 2026 Research Roundup

Research Roundup

March 2026

Monthly_research_roundup_from_martine_walmlsey

PSC research is moving faster than ever, exploring different avenues to find treatments. That's important as it is unlikely that one treatment will be the answer for everyone. We are working hard behind the scenes to support promising research and ensure our healthcare systems are set up to deliver new treatments when they arrive. Here is a roundup of the latest developments.

What is the status of NCA (NorUrso) in the UK?

NCA (also called NorUrso) is currently being evaluated by the National Institute for Health and Care Excellence (NICE). This is a historic moment as it is the first potential treatment for PSC to reach this stage of evaluation in the UK. PSC Support is preparing evidence for NICE to demonstrate the impact of living with PSC.

  • Your Voice Matters: We will soon launch arguably our most important survey to date to gather this evidence. Please look out for it in our newsletter and on social media in April.
  • Timeline and Access: We do not yet know if NCA will be approved for NHS use. The process could take a year, and even if approved, it may not be available to every patient. We will provide updates as and when we can (respecting all confidentiality rules).
  • Did you take part in this clinical trial? First, thank you. We wouldn't be at this stage without you. Second, please get in touch with me if you were on the trial as I'd like to ask you a couple of questions.

Is ritivixibat a potential treatment for PSC?

Results from the Phase 2 clinical trial of ritivixibat (A3907) have recently been released. This study explored the safety and efficacy of this medication in treating the symptoms and underlying progression of PSC. The findings on how this drug impacted bile acid levels and patient symptoms can be found in our report.

Can people with PSC use GLP-1 medications for weight loss?

With the rise of GLP-1 medications (such as semaglutide) for weight loss, the PSC community has been asking questions about their safety. While these medications can be effective for weight management, patients with liver disease must not take them without first checking with their IBD or PSC Consultant. Read our full guidance here.

PiSCATIN clinical trial update

PSC Support is helping to fund the PiSCATIN study in Sweden to evaluate the use of statins in PSC. It has officially recruited all its participants. This is a significant achievement that brings us one step closer to understanding if statins can improve outcomes for people with PSC. We are grateful to every volunteer who has participated in this research.

New research funded by PSC Support

Last but not least, thanks to your generous donations, PSC Support is proud to announce that we are funding two new, high-quality research projects. Both studies are continuations of previously funded work, ensuring we build on existing discoveries to move closer to clinical tools and treatments.

  • Dr Edward Jarman: Investigating if specific biliary cells represent a targetable state in the transition from PSC to cholangiocarcinoma.
  • Dr Pedro Rodrigues and Professor Jesús Bañales: Working on the international blind validation of new blood metabolomic tests for PSC and cholangiocarcinoma.

More details to follow.

Do drop me an email if you have any questions, and especially if ou were on the Dr Falk clinical trial:

Martine Walmsley

PSC Support Head of Research and Policy
ERN RARE-LIVER Management Board and PSC Working Group Co-Lead

martine@pscsupport.org.uk

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Turning Ambition into Action in 2026:

Our Fortnight in Focus

At PSC Support, we want a world without PSC. We work tirelessly behind the scenes to drive research and improve lives. Here is a snapshot of what we've been up to:

Improving Care: We attended a major national clinical conference to equip general gastroenterologists and nurses with specialist knowledge, which helps ensure future work is better aligned with what people with PSC need by improving local care and pathways.

Progressing Research: Our 2024 investment into early-stage research to build necessary scientific evidence enabled Dr James Sun to secure major national funding to explore the genetic drivers of the disease. This foundational knowledge is essential for identifying potential new treatments.

Progressing Research: We supported the development of a research manuscript on nutrition in PSC, so that the findings can be effectively shared with the wider medical community. This will help us advocate for the needs of people with PSC to ensure they get the care they need at the right time.

Improving Care: We hosted a clinical consensus meeting to map out an ideal PSC care pathway, which helps ensure future PSC management is better aligned with what people with PSC need. Establishing standard protocols across the NHS is essential for eliminating regional variations in care.

Progressing Research: We contributed to the strategic planning of an international rare liver disease network, which supports progress towards better care for people with PSC. Broadening our influence ensures patient needs are integrated into wider clinical strategies.

Improving Care: We shared firsthand experiences of living with PSC at an international medical school event, which improves clinical understanding of the disease for healthcare professionals. This is important because ensuring future specialists understand the human impact of PSC helps drive patient-centered care and clinical excellence.

Progressing Research: After just over 48 hours on our Big Give Small Charity Week match funding initiative, your donations helped us get to 78% of the way to our £20,000 goal! Thank you! Can we reach 100%?

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