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Epidemiology

Authoring team

Prevalence is estimated at 1 to 6 per 100,000. Higher rates occur in North America and Northern Europe compared with Asia and other regions. (1)

Other features include: (2)

  • mean age at the time of diagnosis is 39 years
  • 70% of patients are men
  • typically occurs in patients with inflammatory bowel disease, but may also occur in association with retroperitoneal or mediastinal fibrosis
  • of the 75% of patients with primary sclerosing cholangitis who have inflammatory bowel disease, about 87% have ulcerative colitis and 13% have Crohn's disease

Reference

  1. Cooper J et al. Incidence and Prevalence of Primary Sclerosing Cholangitis: A Meta-analysis of Population-based Studies. Inflamm Bowel Dis. 2024 Nov 04;30(11):2019-2026
  2. Boonstra K, Beuers U, Ponsioen CY. Epidemiology of primary sclerosing cholangitis and primary biliary cirrhosis: a systematic review. J Hepatol. 2012 May;56(5):1181-1188.

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