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Background and Aims: The risk of HCC in primary sclerosing cholangitis (PSC) is unclear. Studies indicate a low risk for HCC, questioning the rationale for current HCC surveillance guidelines. This study explores the risk of HCC in a longitudinal multicenter cohort with over 3000 PSC subjects.

Approach and Results: Subjects with well-characterized PSC (n=3071) were followed at 12 university hospitals within the International PSC Registry (IPSCR) collaboration for a total of 38,387 person-years. Incident HCC was registered. Subjects were followed from PSC diagnosis until death, liver transplantation, diagnosis of hepatobiliary malignancy, or February 2024. Poisson regression was used to calculate incidence rate ratios for HCC for the total population and for subgroups of different ages and cirrhosis status. Thirty-nine subjects developed HCC after a mean time of 16.4 years (SD ±10.7) from PSC diagnosis. In 26 (66.7%) of HCC cases, cirrhosis was diagnosed before HCC. The mean age at HCC diagnosis was 55.6 years (±SD13.1 years), and 28 (71.8%) were male. HCC was associated with cirrhosis (IRR: 10.8, 95% CI: 5.7–20.5) and age (IRR 1.05, 95% CI: 1.03–1.08). At the age of 50, the incidence rate was 0.81 and 0.47 for cirrhotic men and women, respectively. For non-cirrhotic subjects, the risk was low for both men and women and all age groups.

Conclusion: HCC is relatively rare in patients with primary sclerosing cholangitis who do not have cirrhosis, especially in those under the age of 50. Our findings indicate that HCC monitoring for patients with PSC can be tailored based on their age and cirrhosis status.