UCD: The average length of survival after UCD diagnosis is greater than 10 years, and life expectancy is usually not changed by UCD.

MCD: The 5-year overall survival rate of HIV negative (presumed HHV8-negative) MCD was 65% in a 2012 case series published prior to the approval of anti-IL-6 therapy (1). A study in 2021 found a 75% 5-year overall survival rate among iMCD patients (2). There is reasonable hope that the survival rates are currently greatly improved due to the new breakthroughs in treatment (such as anti-IL6 blockade). The CDCN is currently leading a global patient research study to collect data to update these numbers. Patients can enroll at

  1. Dispenzieri A, Armitage JO, Loe MJ, et al. The clinical spectrum of Castleman’s disease. Am J Hematol. 2012;87(11):997-1002.
  2. Cohen A, et al. Clinical characteristics, treatment patterns, and overall survival of real-world patients with idiopathic multicentric Castleman disease. Journal of Clinical Oncology. 39, no. 15_suppl (May 20, 2021) 7048-7048.

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