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.