Progress Update: Characterising Genetic Changes in Bile Ducts
Progress Update: Characterising Genetic Changes in Bile Ducts
Dr James Sun
We are pleased to share a significant update on the PSC Support-funded research project, 'Characterising genetic changes in bile ducts.' This work is a crucial step in fulfilling our goal to Unlock Understanding of Primary Sclerosing Cholangitis (PSC) by investigating the fundamental biological processes that cause the disease.
The research team has made excellent progress in setting up the foundational elements required for the study's core analysis:
- Sample Collection Complete: We are grateful to the PSC patients who agree to let researchers take samples for research purposes.
- 3D Model System Established: The complex three-dimensional (3D) model system, which will be essential for investigating how genetic changes affect bile duct cells, has been successfully set up and validated by the team.
- Critical Analysis Underway: The project is now moving into the key analytical phase. The team is currently working to conduct DNA sequencing to detect the precise genetic changes being investigated. The researchers are carefully assessing the most effective technique to use to ensure the data is meaningful and robust, reflecting a measured and scientific approach.
This work is part of our commitment to accelerating research to find the breakthroughs people with PSC so desperately need. If you have donated or fundraised for PSC. Thank you. These projects are only possible because of you.
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.