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:
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.