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Epidemiology

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Prevalence is estimated at 1 to 6 per 100,000.

Other features include:

  • 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

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