Research Update: New Clues to PSC Progression
We have a significant update from the PSC Support-funded research project that aims to better predict how PSC progresses.
Researchers are using a cutting-edge technique called spatial transcriptomic analysis to create a highly detailed map of PSC liver tissue, showing which genes are active in specific cells and where they are located. They are analysing 16 liver tissue samples taken over time, including some from people who later developed cholangiocarcinoma (bile duct cancer), which could help identify early warning signs.
Early findings show important differences in the immune environment of PSC compared to other liver conditions. For example, protective Kupffer cells appear better preserved in PSC, while a higher number of potentially damaging cytotoxic CD8 T cells have been observed.
This early research is providing crucial new insight into the unique immune processes of PSC. The goal is that this work will ultimately lead to better methods for detecting progressive disease earlier in the future.
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:
Building Partnerships: We led an international discussion on removing barriers that delay research, ensuring that drug development is built around the practical realities of living with PSC.
Building Partnerships: We joined an AMMF webinar to share specialist transplant knowledge with healthcare professionals to help ensure that clinicians are aware of evolving care options and can better support patients facing transplant and CCA.
Building Partnerships: We presented the latest the PSC Working Group's achievements at the European Reference Network meeting of liver experts to drive collaboration and improve clinical standards worldwide.
Empowering our Community: We signed an international declaration advocating for rare disease research to be a priority in health policy, ensuring long-term funding for PSC.
Improving Care: We initiated collaborations with clinical experts to streamline specialist referral pathways, ensuring patients get the right care at the right time.
Organisational Excellence: We refined our strategic objectives to ensure every penny donated is focused on the most impactful work for our community.
Organisational Excellence: We met with our Board of Trustees to report on work so far this year to ensure the charity continues to meet the highest standards of governance and ensure we are delivering the maximum benefit for people with PSC.
Progressing Research: There are now 55 volunteers in our Patient Panel! The ensures that a diverse range of lived experiences directly shapes future PSC research and care.
Progressing Research: We reviewed research summaries for a pharmaceutical partner to ensure that study results are communicated clearly and transparently to our community.
Progressing Research: We provided patient leadership on a major new steering committee to ensure research into liver complications remains grounded in patient needs.
Progressing Research: The UK PSC Care Guidelines are going to be updated! We joined the national steering committee to update them, ensuring the "rulebook" for how doctors treat PSC is co-written by the patients who live with it.