Key Statistics for Castleman Disease

We aren't sure how many people are diagnosed with Castleman disease (CD) each year. The National Cancer Institute keeps track of how many people have each type of cancer, but because CD is not a cancer it is not included. We do know that CD is rare, especially in people who are otherwise healthy. Recent studies that looked at medical records of patients with CD suggest there may be about 4,300 to 5,100 new cases of CD per year in the US.

  • The localized (unicentric) form of CD is more common than the multicentric form (MCD).
  • MCD is much more likely to occur in people infected with HIV. Over the past few decades, as the number of people with HIV infection has increased, the number of people diagnosed with MCD has also gone up.
  • Modern anti-viral treatments have helped people with HIV live much longer, but these drugs don’t seem to lower the chance of getting MCD.
  • CD can affect children as well as adults. Younger people are more likely to have the localized form.
  • Older adults and those with HIV infection are more likely to have the multicentric form.

For statistics related to survival, see Survival Rates for Castleman Disease.

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

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National Cancer Institute. Castleman disease. Accessed at on
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Oksenhendler E, Boutboul D, Fajgenbaum D, Mirouse A, Fieschi C, Malphettes M, Vercellino L, Meignin V, Gerard L, Galicier L. The full spectrum of Castleman disease: 273 patients studied over 20 years. Hematol Oncol Clin North Am. 2018;32(1):75-88.  

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Last Revised: February 1, 2018

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