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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:

Organisational excellence: We simplified our personal data consent process and streamlined how we record patient stories to ensure that the lived experiences of our community are captured accurately and securely to inform future work.

Progressing Research: We coordinated a series of upcoming meetings with international researchers and pharmaceutical companies, which supports better informed decisions for people with PSC, research, or care. This groundwork helps keep PSC research focused on the primary needs of the patient community.

Progressing Research: We reviewed and contributed to scientific abstracts and posters for the upcoming EASL international liver congress, which strengthens the quality of future research for people with PSC, research, or care. 

Progressing Research: We engaged with the MHRA to prepare for the upcoming national consultation on rare disease therapies, representing PSC patients in the wider community. Maintaining this direct dialogue ensures our organisation is prepared to respond formally and protect the interests of those living with PSC

Improving Care: We presented about what it is really like to live with PSC to gastroenterologists This first-hand insight equips healthcare professionals to better understand the day-to-day challenges of PSC.

Income Generation: We secured a place in the prestigious Big Give Small Charity Week match-funding campaign, so that we can maximise future donations from our supporters as every donation between 22 and 29 June will be doubled!

Progressing Research: We recruiting for a research and advocacy officer to expand our core team. This additional capacity ensures we can better support scientific studies and represent the patient voice at every level. 

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