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Clinical Trials for Craniopharyn-giomas

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What is a craniopharyngioma?

A craniopharyngioma is a tumor arising from small nests of cells near the pituitary stalk at the base of the skull, near the pituitary gland, third ventricle, and optic nerve.  Like most brain tumors, the exact cause of craniopharyngioma is not known.

Craniopharyngiomas represent 2-5% of all primary brain tumors in adults.  This tumor tends to be found in two age groups—patients up to age 14 and patients over age 45.  They are more common in African-American patients.

How is a craniopharyngioma treated?

Although these tumors are designated as Grade I by the World Health Organization (WHO), their clinical course can be far from benign. Symptoms arise from increased pressure on the optic tract and pituitary gland, leading to visual impairment, endocrine dysfunction, and obesity.  Since there are limited treatment options beyond surgery and radiation, clinical trials are an important part of managing this group of patients. The Ivy Brain Tumor Center is one of the few centers worldwide with an emphasis on developing new experimental therapeutics for recurrent craniopharyngioma.

Craniopharyngioma Brain Tumor Symptoms

Craniopharyngioma brain tumor symptoms vary widely depending on the type, location, size and growth rate of the tumor. There is no set of symptoms that are attributable to a single type of brain tumor.

General symptoms of brain tumors include:

  • New onset or change in pattern of headaches
  • Headaches that gradually become more frequent and more severe
  • New onset of seizures
  • Gradual loss of sensation or movement in an arm or a leg
  • Difficulty with balance
  • Difficulty speaking
  • Personality or behavior changes
  • Confusion
  • Unexplained nausea or vomiting
  • Blurred vision, double vision, or loss of peripheral vision
  • Hearing problems

Contact your physician if you are experiencing any of these symptoms.


Since there are limited treatment options for these tumors, clinical trials are an increasingly  important part of managing this diagnosis. Worldwide, there are few active drug development efforts focusing on this tumor, but, for this reason, the Ivy Brain Tumor Center places a particular emphasis on cultivating experimental therapy options within our clinical trials’ portfolio for this underserved patient population. 

If you have a craniopharyngioma and have undergone MR imaging with evidence of tumor recurrence, you may be a candidate for one of our Phase 0  clinical trials. Our Phase 0 studies provide you with information you can use right now to make informed treatment decisions. This knowledge allows you to have a voice in your care and places some control back into your hands.

Medically Reviewed by: Dr. Nader Sanai

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