Driving Better Diagnostics

Researchers we are working with on blood tests for PSC have shared new findings in at a conference. They have identified that substances in the blood can help identify advanced liver scarring in people with PSC. By measuring these specific markers, doctors could better detect cirrhosis and predict the risk of needing a liver transplant, potentially offering more accuracy than current methods. This advancement could significantly improve long-term patient care¹.

Catanzaro E, Lapitz A, Milkiewicz P, Elgozair M, Ahmed F, Hov JR, Folseraas T, Carbone M, Macias RI, Schramm C, Alonso C. Blood Metabolomic Signature for Diagnosing Cirrhosis and Predicting Prognosis in Patients with Primary Sclerosing Cholangitis. Digestive and Liver Disease. 2026 Feb 1;58:S77-8. (Congress abstract) 

The Gut Microbiome and PSC

A recent review paper² provides an overview of the gut microbiome and interventions to manipulate it, particularly through faecal microbiota transplantation (FMT):

• PSC is closely associated with inflammatory bowel disease (IBD), suggesting that the gut microbiota plays a key role in the development of the disease.
• A small pilot study of 10 patients with PSC-IBD mentioned in the paper noted that 30% of participants experienced a greater than 50% decrease in alkaline phosphatase (ALP) levels following FMT.
• The paper reported improvements in liver biochemistry and bacterial community composition with no relevant adverse events (medical complications), suggesting FMT may be a potential treatment approach for PSC. However, the authors emphasise that further, larger-scale studies are required to verify these findings.
• Fun fact from the review! Apparently the gut microbiome weighs 1 to 2kg and has 150 fold more genes than the human genome.

The FARGO trial, led by Professor Trivedi at the University of Birmingham, is currently assessing FMT for PSC. So far, around 30 participants have completed their FMT treatment, and the study is still actively recruiting in Oxford and London.

Uygun A. Current Clinical Importance of Fecal Microbiota Transplantation Treatment (FMT) in Liver Diseases and Liver Transplant (LT) Recipients. JOURNAL OF INONU LIVER TRANSPLANTATION INSTITUTE.;3(Supp: 1):134-42 (Link to full review)

Understanding Acute Cholangitis

We are working on a long-term international project to understand how acute cholangitis (a bile duct infection) affects people with PSC. Our aim is to use this information to support care and include in future clinical trials. If you live with PSC, please take 10 minutes to fill out this survey, which is now available in multiple languages: Take the survey

SABR-PSC Trial

We recently shared findings from the SABR-PSC study, an early-phase trial testing the safety of brodalumab in people with PSC. Results indicate the drug was safe and well tolerated, with no new concerns regarding liver or IBD flares, providing a positive foundation for further research. Read the full summary

Norursodeoxycholic acid (NorUrso, NCA)

We submitted evidence-based feedback to the National Institute for Health and Care Excellence (NICE) health technology appraisal scoping process (the system used to see if treatments are cost-effective enough to be used in the NHS). This ensures that the lived experiences and clinical needs of people with PSC are accurately represented in the assessment of new treatments, helping to ensure national funding decisions are relevant to our community. The next stage of the NICE evaluation will be in early summer.