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Childhood Cancer Fact Library

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A comprehensive, well-documented and trusted source of information for anyone seeking data and statistics related to pediatric cancers.  The Fact Library team updates its listing annually so that it can continue to be instrumental in building awareness of the realities associated with diagnosis, treatment, remission, and survivorship.

All statistics below are for U.S. children from birth through age 19 unless stated otherwise. This summary relies on the most recent published data with respect to its contents, some of which dates back one or more years.

Latest Complete Data Year

The latest completed data year is 2021.

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Joe Baber

factlibrary@cac2.org

Table of Contents

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Diagnosis

  • Childhood cancer is not one disease – there are more than 12 major types of pediatric cancers and over 100 subtypes.1 American Cancer Society, Childhood and Adolescent Cancer Statistics, 2014 https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2014/special-section-cancer-in-children-and-adolescents-cancer-facts-and-figures-2014.pdf
  • In 2022, it is estimated 10,470 children (birth to 14 years) and 5,480 adolescents (aged 15-19 years) will be diagnosed with cancer.2 Siegel RL, Miller KD, Fuchs HE, Jemal A. Cancer Statistics, 2022. CA: A Cancer Journal for Clinicians 2022; https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21708
  • The overall incidence of childhood cancer is on the increase, averaging 0.8% increase per year since 1975. Children (0-14) increased 0.8%, and adolescents also increased 0.8%. Overall cancer incidence rates increased an average of 1% per year from 1997 to 2018.3 NIH/National Cancer Institute, Age-Adjusted and Age-Specific SEER Cancer Incidence Rates, 2014-2018, Table 2.4 https://seer.cancer.gov/csr/1975_2018/results_single/sect_02_table.01_2pgs.pdf
  • In 2021, there were approximately 88,260 cancer cases diagnosed and about 9,130 cancer deaths in adolescents and young adults (AYAs) ages 15 to 39 years in the US.4 National Cancer Institute, Cancer Stat Facts: Cancer Among Adolescents and Young Adults (AYAs) (Ages 15–39) https://seer.cancer.gov/statfacts/html/aya.html
  • About 1 in 285 children will develop cancer before the age of 20.5American Society of Clinical Oncology (ASCO) 12/2020 https://www.cancer.net/cancer-types/childhood-cancer/introduction
  • Children with Down syndrome are 10 to 20 times more likely to develop leukemia than children without Down syndrome.6The National Cancer Institute “Cancer in Children and Adolescents” 11/04/2021 https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet
  • 47 children per day or 17,293 children (aged 0-19) were diagnosed with cancer in 20187NIH/National Cancer Institute, Age-Adjusted and Age-Specific SEER Cancer Incidence Rates, 2014-2018, Table 2.1https://seer.cancer.gov/csr/1975_2018/results_single/sect_02_table.01_2pgs.pdf
  • As of 2018, 4,317 children and teens under age 20 were diagnosed with CNS tumors, accounting for 25% of total cancer diagnoses in the age group 0-19.8NIH/National Cancer Institute, Age-Adjusted and Age-Specific SEER Cancer Incidence Rates, 2014-2018, Table 2.1 https://seer.cancer.gov/csr/1975_2018/results_single/sect_02_table.01_2pgs.pdf
  • The average age at diagnosis is 10 overall (ages 0 to 19), 6 years old for children (aged 0 to 14), and 17 years old for adolescents (aged 15 to 19)(9), while adults’ median age for cancer diagnosis is 66.9National Cancer Institute, “Age and Cancer Risk” 3/05/2021. Source: SEER 21 2013–2017, all races, both sexes. https://www.cancer.gov/about-cancer/causes-prevention/risk/age
  • Most new cancer diagnoses in children are for leukemia (28.1%) and brain/CNS cancers (26.5%), while malignant epithelial neoplasms and melanomas (23.3%) and brain/CNS cancers (21.9%) are top cancers for adolescents.10NIH/National Cancer Institute, Age-Adjusted and Age-Specific SEER Cancer Incidence Rates, 2014-2018, Table 2.4 https://seer.cancer.gov/csr/1975_2018/results_single/sect_02_table.01_2pgs.pdf

Long Term Health-Effects Associated with Treatments & Survival

  • Childhood cancer is not one disease – there are more than 12 major types of pediatric cancers and over 100 subtypes.11 American Cancer Society, Childhood and Adolescent Cancer Statistics, 2014 https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2014/special-section-cancer-in-children-and-adolescents-cancer-facts-and-figures-2014.pdf

Funding

NCI Childhood Cancers Research Investment

There are two conflicting reporting methods available that are used to gauge federal childhood cancer research investment.  A report used in the past and often cited by advocates, is the National Cancer Institute’s Funded Research Portfolio (NFRP)(7C) below. It indicates that from 2008 through 2018, the NCI spent an average of 4.08% of its obligations on childhood cancer research.   According to NCI’s Office of Advocacy Relations (OAR), the NFRP does not reflect NCI’s total investment in any one particular area of research—including childhood cancers—because it does not account for basic science awards, which are not categorized by cancer type and which may have applications to multiple types of cancer.

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About the NCI Funded Research Portfolio

The NCI Funded Research Portfolio (NFRP) web site contains information about research grants, contract awards, and intramural research projects funded by the National Cancer Institute. The NFRP provides access to various NCI budget reports that contain information about research funding according to specific research categories. It also provides the ability to search the database in various ways, including text searching of project abstracts and the ability to search the NIH research categories that are assigned to projects carried out by extramural and intramural groups.1National Cancer Institute, NIH/NCI https://fundedresearch.cancer.gov/nciportfolio/about.jsp

How does NCI generate NFRP funding data?

At the close of each fiscal year, NCI asks each of its scientific organizations to report their research funding according to specific research categories. The reports that NCI intramural and extramural programs provide are then combined to determine the NCI funding totals for individual research areas. The total research funding for each category is reviewed and verified before NCI publishes on the NCI web site, Cancer.gov.2National Cancer Institute, NIH/NCI https://fundedresearch.cancer.gov/nciportfolio/about.jsp  Unfortunately, the present Research Portfolio only has been completed through 2018. By now, it should have been completed through 2020. NCI stated they were working on it.

What is scientific coding?

Scientific coding refers to the categorization of research projects according to scientific focus. In this process, research projects are analyzed and classified according to scientific topic and content. Scientific coding allows the development of science-based budget information, which can be used in portfolio analysis to examine the distribution of funds across research areas. Scientific coding is also necessary to answer inquiries about the scientific and budgetary aspects of Institute-funded research. NCI employs a sophisticated system of scientific coding in which trained professionals and/or scientific staff analyze grant applications, contracts, and intramural projects to classify each project for its degree of relevance to Special Interest Category (SIC) and Organ Site (SITE) codes. This coding structure is meant to describe in a consistent way the major scientific disciplines requested by NIH, DHHS, Congress, and the public. A critical characteristic of coded data is comparability from one fiscal year to the next. This process allows the Institute to respond quickly to requests for information from NCI staff and the broader community. The coding definitions used by the NCI intramural program are consistent with those used for extramural grants and research and development (R&D) contracts to maintain accuracy across the Institute’s portfolio. 3National Cancer Institute, NIH/NCI https://fundedresearch.cancer.gov/nciportfolio/about.jsp

Another report, preferred by OAR, is the NIH RePORTER, which is a congressionally mandated system all NIH Institutes and Centers (ICs) use to report data by fiscal year (FY). This tool highlights annual support for various research, condition, and disease categories (RCDC) based on grants, contracts, and other funding mechanisms used across NIH.

NIH RePORT Categorical Spending (RCDC) NCI – Pediatric Cancer Category
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According to OAR, like the NFRP, the NIH RePORTER also does not account for the totality of NCI’s investment in a given area of research because basic science awards cannot be categorized by individual cancer type.  Using Total NCI Obligations, without making allowances for NIH items included in the Pediatric Cancer Amount, would distort the percentage of Total Obligations.

While both of the above reports, The NFRP and the NIH RePORTER, seem unable to capture a completely accurate measure of childhood cancer research expenditure as it relates to total research dollars, perhaps a better method to measure progress may be to compare NIH RePORTER pediatric dollars (c) to the Total NIH Dollars (d) for each fiscal year.  This method would show changes from one year to the next.  Note that the chart below shows that the pediatric cancer expenditures are growing from 2016 to 2021.

Disclaimer

THIS DOCUMENT IS NOT INTENDED TO OFFER SPECIFIC STATISTICS REGARDING AN INDIVIDUAL PATIENT OR THE PATIENT’S SPECIFIC FORM OF CANCER AND IS NOT A SUBSTITUTE FOR INFORMATION THAT MAY BE SOUGHT FROM A PHYSICIAN.  IT IS MERELY INTENDED, BASED ON INFORMATION PRESENTLY AVAILABLE TO THE AUTHORS, TO BE A GOOD FAITH GENERAL PRESENTATION OF CHILDHOOD CANCER STATISTICS THAT MAY BE HELPFUL TO OTHERS SEEKING SUCH GENERAL INFORMATION.