ON THIS PAGE: You will find information about the estimated number of children who will be diagnosed with craniopharyngioma each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people are the same. Use the menu to see other pages.
Every person is different, with different factors influencing their risk of being diagnosed with this tumor and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for your child individually. The original sources for these statistics are provided at the bottom of this page.
How many children are diagnosed with craniopharyngioma?
In 2023, an estimated 130 children under the age of 15 in the United States will be diagnosed with craniopharyngioma. This type of tumor is diagnosed most often between the ages of 5 and 14, but it is possible for a person of any age to be diagnosed with craniopharyngioma.
What is the survival rate for craniopharyngioma?
There are different types of statistics that can help doctors evaluate a child’s chance of recovery from craniopharyngioma. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having a tumor may affect life expectancy. Relative survival rate looks at how likely people with craniopharyngioma are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this tumor.
Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of tumor. Let’s assume that the 5-year relative survival rate for a specific type of tumor is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without this tumor, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of tumor that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific tumor (90% of 900) will be alive in 5 years.
It is important to remember that statistics on the survival rates for children with craniopharyngioma are only an estimate. They cannot tell an individual person if the tumor will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.
The 5-year relative survival rate for children under the age of 15 with craniopharyngioma in the United States is 96%.
The survival rates for craniopharyngioma vary based on several factors. These include age and general health, and how well the treatment plan works.
Experts measure relative survival rate statistics for craniopharyngioma every 5 years. This means the estimate may not reflect the results of advancements in how craniopharyngioma is diagnosed or treated from the last 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics.
Statistics adapted from the Central Brain Tumor Registry of the United States Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2015–2019 (published October 2022) and the National Cancer Institute website. (All sources accessed February 2023.)
The next section in this guide is Risk Factors. It describes how there are currently no known factors linked with an increased chance of developing craniopharyngioma. Use the menu to choose a different section to read in this guide.