CBTRUS Fact Sheet

The Central Brain Tumor Registry of the United States (CBTRUS) maintains and regularly updates a database of primary malignant and non-malignant tumors of the brain, other central nervous system (CNS), tumors of the pituitary and pineal glands, and olfactory tumors of the nasal cavity (including brain lymphoma and leukemia). These data are the source of the information below about incidence rates and estimated new cases within the United States.

Data are obtained on all newly diagnosed primary brain and CNS tumors from two national sources: the National Program of Cancer Registries (NPCR), part of the Centers for Disease Control and Prevention (CDC), and the Surveillance, Epidemiology and End Results (SEER) program within National Institute of Health’s National Cancer Institute (NCI). Cancer surveillance data (of all types of cancer) from these two programs are combined and are referred to as the United States Cancer Statistics (USCS), the official source for federal cancer data.

There are 52 population-based central cancer registries that contribute to this data collection effort. They include cancer registries from all 50 states plus the District of Columbia and Puerto Rico. These data represent approximately 100% of the US population.

The CBTRUS database is comprised of only de-identified data. No patient-identifying information is collected.

  • As of 2019, CBTRUS uses the NPCR’s United States Cancer Statistics (USCS) survival data to present survival statistics. Survival data for malignant brain and other CNS tumors were obtained from the USCS program for 43 NPCR registries for the years 2001 to 2015 and for non-malignant brain and other CNS tumors for the years 2004 to 2015.
  • Worldwide incidence rates, used for comparison, are from the International Agency for Research on Cancer (IARC), which includes primary malignant tumors of the brain and other CNS (excluding brain lymphoma and leukemia, tumors of the pituitary and pineal glands, and olfactory tumors of the nasal cavity). These global rates are age-adjusted using the world standard population. These rates may be compared to other rates adjusted to the world standard population, but they cannot be compared to rates adjusted to other population standards, such as the 2000 United States standard population.
  • Incidence rates in the US provided by CBTRUS are based on the 2000 United States standard population, and are reported per 100,000 population for 2012–2016.

The facts provided below are based on the most up-to-date information available and includes almost 100% of the US population. This information is based on data from 2012-2016 that was analyzed in 2019.

Incidence Overall

  • The incidence rate of all primary malignant and non-malignant brain and other CNS tumors in the US was 41 cases per 100,000 for a total count of 405,740 incident tumors; [7.08 per 100,000 for malignant tumors (122,569 cases) and 16.33 per100,000 for non-malignant tumors (283,171 cases)]. The rate was higher in females (25.84 per 100,000) than males (20.82 per 100,000).1
  • An estimated 87,240 new cases of primary malignant and non-malignant brain and other CNS tumors are expected to be diagnosed in the US in 2020.1This includes an estimated 25,800 primary malignant and 61,430 non-malignant brain and other CNS tumors.a,1
  • The worldwide incidence rate of primary malignant brain and other CNS tumors in 2018, age-adjusted using the world standard population, was 3.5 per 100,000. Incidence rates by sex were 3.9 per 100,000 in males and 3.1 per 100,000 in females. This represented an estimated 162,534 males and 134,317 females who were diagnosed worldwide with a primary malignant brain tumor in 2018, an overall total of 296,851 individuals.2
  • Incidence rates were higher in high income countries (5.1 per 100,000) than low middle (2.2 per 100,000) or low income countries (1.5 per 100,000).2

Pediatric Incidence (Ages 0-14 Years)

  • The incidence rate of childhood primary malignant and non-malignantbrain and other CNS tumors in the US was 5.74 cases per 100,000 for a total 5-year count of 17,540 cases.  The rate was higher in males (5.97 per 100,000) than females (5.51 per 100,000).1
  • An estimated 3,540 new cases of childhood primary malignant and non-malignantbrain and other CNS tumors are expected to be diagnosed in the Unites States in 2020.1

Adolescent & Young Adult (AYA) Incidence (Ages 15-39 Years)

  • The incidence rate of AYA primary malignant and non-malignantbrain and other CNS tumors in the US was 11.40 cases per 100,000 for a total 5-year total of 59,515 cases.1   The rate was higher for non-malignant tumors (8.17 per 100,000) than primary malignant tumors (3.23 per 100,000).3
  • In 2020, 12,090 new cases of AYA primary malignant and non-malignantbrain and other CNS tumors are expected to be diagnosed in the US.31

Mortality

  • The average annual mortality rate in the US between 2012 and 2016 was 4.42 per 100,000 population with 79,718 total deaths attributed to primary malignant brain and other CNS tumors.  This represents an average of 15,944 deaths per year and 44 deaths per day.1,4
  • It was estimated that there would be 17,760 deaths due to primarymalignant brain and other CNS tumors in the US in 2019 with 9,910 of these deaths occurring in males and 7,850 occurring in females.4

Lifetime Risk

  • From birth, a person in the US has a 0.62% chance of ever being diagnosed with a primary malignantbrain and other CNS tumor (excluding lymphomas, leukemias, tumors of pituitary and pineal glands, and olfactory tumors of the nasal cavity) and a 0.48% chance of dying from the primary malignant brain and other CNS tumor.5
  • For males in the US, the risk of developing a primary malignantbrain and other CNS tumor is 0.69%, and the risk of dying from a primary malignant brain and other CNS tumor is 0.54%.5
  • For females in the US, the risk of developing a primary malignantbrain and other CNS tumor is 0.55%, and the risk of dying from a primary malignant brain and other CNS tumor is 0.42%.5

Survival

  • The five-year relative survival rate in the US from 2001 to 2015 following diagnosis of a primary malignant brain and other CNS tumor (including lymphomas and leukemias, tumors of the pituitary and pineal glands, and olfactory tumors of the nasal cavity) was 8% with 34.8% for males and 37.1% for females (2001–2015 data).1
  • Survival after diagnosis with a primary malignant or non-malignant brain tumor in the US varies significantly by age, histologic type, and behavior. Five-year relative survival rates following diagnosis of a primary malignant brain and other CNS tumor (including lymphoma, leukemia, tumors of the pituitary and pineal glands, and olfactory tumors of the nasal cavity) by age of diagnosis were:
  • Age 0–19 years: 75.5%
  • Age 20–44 years: 65.1%
  • Age 45–54 years: 34.5%
  • Age 55–64 years: 19.8%
  • Age 65–74 years: 13.1%
  • Age 75 or older: 7%

Survival after diagnosis with a non-malignant brain and other CNS tumor also varies. Five-year relative survival in the US from 2004 to 2015 after diagnosis with a non-malignant brain and other CNS tumor was 91.5% in the US with 90.8% for males and 92.0% for females (2004–2015 data).1

Prevalence

  • The overall 2010 prevalence rate for all primary malignant brain and other CNS tumors was estimated to be 47.60 per 100,000 population, or a total of 103,634 cases.6
  • Prevalence in children (0–14 years old) was estimated to be 22.31 per 100,000 population (13,657 cases) in 2010.6
  • Prevalence in AYA (15–39 years old) was estimated to be 48.49 per 100,000 (31,299 cases) in 2010.66
  • Glioblastoma had the highest age-adjusted prevalence rate of all primary malignant brain and other CNS tumors in adults age 20+ years with a prevalence rate of 23 per 100,000 population (23,327 cases) in 2014.7
  • Pilocytic astrocytoma had an age-adjusted prevalence rate of 2.65 per 100,000 population (5,968 cases) in 2014. This was highest in adults age 20-29 years, with a prevalence rate of 6.63 per 100,000 population (2,979 cases).7

Notes

a Estimated incident numbers for malignant and non-malignant brain and other CNS tumors were calculated for 2019 and 2020 using age-adjusted annual brain tumor incidence rates (2000–2016 for malignant tumors, and 2006–2016 for non-malignant tumors) by state, age, and histology.b

b Joinpoint 4.7.0.0 was used to fit regression models to these incidence rates, which were used to predict numbers of cases in future years using the parameter from the selected models. Please see Reference 1 for additional information.

References

1 Ostrom QT, Cioffi G, Gittleman H, Patil N, Waite K, Kruchko C, Barnholtz-Sloan JS. CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2012–2016. Neuro Oncol. 2019.

2 Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A (2018). Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 68(6):394–424. https://doi.org/10.3322/caac.21492 PMID:30207593.

33 Surveillance Epidemiology and End Results (SEER) Program. SEER*Stat Database: Mortality—All COD, Aggregated With State, Total U.S. (1969-2016) <Katrina/Rita Population Adjustment>, National Cancer Institute, DCCPS, Surveillance Research Program, Surveillance Systems Branch, released December 2018. Underlying mortality data provided by NCHS (www.cdc.gov/nchs).

4 Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin. 2019 Jan;69(1):7-34. doi: 10.3322/caac.21551. Epub 2019 Jan 8. PubMed PMID: 30620402.

55 Surveillance Epidemiology and End Results (SEER) Program. DevCan database: “SEER 18 Incidence and Mortality, 2000–2016, with Kaposi Sarcoma and Mesothelioma.” National Cancer Institute, DCCPS, Surveillance Research Program, Cancer Statistics Branch, released April 2019, based on the November 2018 submission. Underlying mortality data provided by NCHS  (www.cdc.gov/nchs).

6 Zhang AS, Ostrom QT, Kruchko C, Rogers L, Peereboom DM, Barnholtz-Sloan JS. Complete prevalence of malignant primary brain tumors registry data in the United States compared with other common cancers, 2010. Neuro-Oncology. May 01 2017; 19(5): 726–735.

7 Gittleman H, Bosica A, Ostrom QT, Truitt G, Fritz Y, Kruchko C, Barnholtz-Sloan JS. Survivorship in adults with malignant brain and other central nervous system tumor from 2000 to 2014. Neuro Oncol. May 29 2018; [Epub ahead of print].