Primary sclerosing cholangitis (PSC) is a disease in which the immune system attacks the tubes that drain bile from the liver (the bile ducts). This leads to infections of the bile ducts, scarring of the liver (fibrosis), and eventual liver failure in need of transplantation. Moreover, 15% of people can develop bile duct cancer or bowel cancer at a young age. Although a rare disease (affecting 6 per 100,000 people in the UK), PSC represents one of the greatest unmet needs in medicine, given that no medical therapy has been shown to stop disease progression. Liver transplantation is the only lifesaving intervention for patients, with PSC accounting for 10 to 15% of all UK transplant activity. Unfortunately disease can recur after transplantation, and is a major contributor to liver graft loss.
The cause of PSC is unknown, but most affected individuals also suffer with inflammatory bowel disease (IBD). Of note, the degree of gut inflammation can limit treatments on offer for liver disease in PSC. Indeed, the horizon for new treatments is encouraging, given innovative clinical trials, bespoke risk stratification studies, and novel biomarker discovery platforms; emphasising the importance of a truly holistic approach to clinical care.
Information about the service
The Birmingham PSC-IBD service is the only multidisciplinary clinic of its kind run throughout the UK, with a collocated outpatient service offering access to consultant hepatologists, dedicated IBD specialists, specialist IBD and autoimmune liver disease nurses, psychological support for young persons with chronic liver disease, and ready access to ‘first-in-the-world’ clinical trials.
The PSC-IBD service is led by:
- James Ferguson, Fiona Thompson and Palak Trivedi (Hepatology)
- Tariq Iqbal (Gastroenterology)
- Monica Smith and Jennifer Hayden (Specialist Nurses)
Consultations involve a detailed clinical assessment, staging of liver disease severity, intensive cancer surveillance, and detailed discussion about ‘state-of-the-art’ emergent therapies for PSC and IBD. A dedicated research nurse will also be on hand to review eligible clinical trial participants.
Last reviewed: 11 July 2023
