Behind the Scenes: How We Are Shaping the Future of PSC Research
Behind the Scenes: How We Are Shaping the Future of PSC Research
Research Publications
At PSC Support, our mission to see a world without primary sclerosing cholangitis (PSC) goes far beyond our office walls. While we are well-known for our support services, advocacy and research funding programme, a significant part of our work happens in the global research arena: co-authoring the studies that are shaping the future of care.
We are excited to share that we have recently updated our Publications list. This is not just a record of our history, it is a map of where we have been working to ensure the patient voice is embedded into the heart of scientific research.
Why co-authoring matters
You might wonder why it is important for a charity to be a co-author on scientific manuscripts. The answer is simple: it ensures that research remains relevant to those who need it most. When we sit at the table with the world’s leading researchers, we bring something unique to the conversation: the reality of living with PSC.
By co-authoring, we ensure that:
- The PSC Patient Perspective is Integrated: We bring real-world patient data and experience into the interpretation of research findings, ensuring the results reflect what is actually happening for people with PSC.
- Unmet Needs are Clearly Identified: We help define and highlight the most critical gaps in our current understanding of PSC, ensuring that the research community focuses on the areas where patients need progress the most.
- Evidence-Based Care is Strengthened: We contribute our experience to national and international clinical guidelines, helping to ensure that the best available evidence, informed by the patient experience, is used to improve daily care.
Moving PSC Research Forward
Progress in a rare disease like PSC can feel slow, but by working directly with other patient organisations and leading scientists and clinicians, we are helping to ensure that research is grounded in the lived experience of our community. Our co-authorship ensures that the patient voice is not just heard, but is a fundamental part of the scientific process.
We are proud of the work we have accomplished alongside our partners over the past 15 years, and we remain dedicated to turning discoveries into the real-world tools that people with PSC need to live well and for longer. We would also like to extend a sincere thank you to the many experts we have had the privilege to work with; we are deeply honoured that they choose to partner with us, consistently ensuring that the patient voice is not only heard but actively integrated into the design and interpretation of their research.
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%?