Statistics for cancers in children, adolescents, and young adults

NCCR Data Products

Data from the NCCR are made available through several sources allowing researchers, patients, and advocates to access open and controlled data and promote wider use of childhood cancer data. Read the options below to understand which option best suits your needs.

On This Page

Comparison of National Childhood Cancer Registry (NCCR) Data Products

NCCR*Explorer NCCR Data in SEER*Stat NCCR Data Platform
What's Included Precalculated incidence, survival, and prevalence statistics Frequencies and rates (e.g., trends, age-adjusted rates) and Survival statistics Data exploration, cohort discovery, data visualization, data access requests, and custom datasets available for analysis
Where to Find NCCR*Explorer Website Access SEER Research Plus and NCCR Data NCCR Data Platform Website
How to access
Access Requirements Publicly available, open access web application (No login required) Authentication with an eRA Commons or HHS account Requires access to NCCR Data in SEER*Stat and authentication with an eRA Commons or HHS account
Data Use Agreements Not required Required Required
Institutional Review Board (IRB) Approval Not required Not required Required for individual-level data access
Not required for aggregate statistics and counts
Availability of Individual-Level Data Not Available Not Available Available
About the Data Source and Demographics
Participating Registries 28 NCCR Registries 20 States and Seattle 22 SEER Registries
Population Coverage (% of U.S. ages 0-39) 75% 59% 58%
Ages 0-39 0-39 0-39
Years of Diagnosis 2001-2021 1997-2021 1995-2021
Number of Cancer Cases 1.8+ million reported cancer cases (1995-2021) 1.4+ million reported cancer cases 1.5+ million reported cancer cases
Data Sources NAACCR CiNA submissions NAACCR CiNA submissions Multiple sources: links data from population-based cancer registries and real-world data partners. Nationally de-duplicated between registries and across all data sources

Childhood Cancer Statistics Available from NCCR Aggregated Data

Data from central cancer registries participating in the NCCR are available at an aggregated level through this website's interactive web application, NCCR*Explorer.

It provides:

  • A publicly available, open access web application.
  • Comprehensive and frequently requested incidence and survival statistics based on International Classification of Childhood Cancer.
  • Age groupings specific for children, adolescents, and young adults ages 0-39.
  • Access to precalculated graphs and tables to visualize rates, trends, rates by age, and relative survival by sex, race/ethnicity, age, and by cancer site and subtypes.
  • Direct comparison of cancer sites.

NCCR*Explorer is updated annually to incorporate data from the prior year's submission of newly diagnosed cancer patients and to enhance the statistics available in the product.

NCCR Data Available for Analysis

NCCR makes the data available through registered and controlled access for researchers interested in using the NCCR data for their own analyses. Read the options below to understand the data products and their access requirements.

NCCR Data in SEER*Stat

A limited set of data from the NCCR-participating registries is available for analysis through SEER*Stat. SEER*Stat is a statistical software that uses raw data to calculate cancer statistics, rates, and trends. This data cannot be downloaded and will not display case-level or patient-level data; it can only be used to display the results of statistical analytic features already in SEER*Stat. Tutorials are available describing how to use SEER*Stat.

NCCR data released through SEER*Stat are updated annually to incorporate data from the prior year's submission of newly diagnosed cancer patients.

How to Request NCCR Data in SEER*Stat

Access to the NCCR Data in SEER*Stat is included with the SEER Research Plus Data which requires user authentication through eRA Commons or an HHS account. Investigators from research institutions must login with a valid institutional email address, provide the institution's Signing Official contact information, and agree to the Data Use Agreements and Best Practices Assurances. Visit the SEER website for instructions on How to Request Access to Research Plus and NCCR Data.

NCCR Data Platform (now available)

The NCCR Data Platform links data about children, adolescents, and young adults (AYAs) with cancer from population-based cancer registries and other data partners. The de-identified data are provided to authorized researchers to advance the scientific understanding on causes, effective treatments, and longitudinal effects of childhood cancer. The platform makes de-identified data easy to search, request, visualize, and analyze in a secure system. Data are matched for the same person across medical and pharmacy claims, clinical trials, electronic health record systems, and other sources and then consolidated in one place. The platform will be an interoperable component of the Childhood Cancer Data Initiative (CCDI) Data Ecosystem.

The Data Platform offers features such as cohort discovery, data exploration and visualization, data access requests, and custom dataset generation for analysis. If a researcher has a specific cohort of interest, they may request a custom data file through the NCCR Data Platform's request process. To ensure ethical use of data and to protect patient confidentiality and privacy, all requests to analyze individual-level data are required to obtain review from an Institutional Review Board (IRB).

How to Access the NCCR Data Platform

Researchers, advocates, journal reviewers, patients, and others may access the NCCR Data Platform and submit data requests by following these steps:

  1. Users who do not have an HHS email address must do the following (otherwise they may skip to the next step):
    1. The user acquires an eRA Commons account through their organization.
    2. The user creates a Login.gov account and links it with their eRA Commons account.
  2. The user acquires an ORCID ID (and links it with their eRA Commons account if they are not an HHS user).
  3. The user applies for access to the SEER Research Plus and NCCR Data. In this initial step, NCI verifies the user's identity, and the user acknowledges the terms of the NCCR data use agreement.
  4. Once the user has been approved to access SEER Research Plus, they may log in to the NCCR Data Platform to:
    1. View aggregate tables, figures, and counts of patients that meet a cohort discovery search.
    2. Submit queries to the CCDI Participant Index (CPI) and see indicators for whether data about the same individual is available in other CCDI resources (this feature is coming soon).
  5. To access individual-level data, the user must create a data access request, acquire IRB review from their affiliated organization, and submit the request to NCCR’s Data Access Committee for approval.
  6. The user must also submit a data access request to other CCDI resources, per their policies, to obtain individual-level data from those other resources, like the Cancer Research Data Commons (CRDC) or the database of Genotypes and Phenotypes (dbGaP).
  7. Data requests will be reviewed and approved by the NCCR Data Access Committee and the appropriate committee(s) for other CCDI resources.
  8. When data access is approved from each CCDI resource, users can bring other CCDI data to the NCCR Data Platform for analysis of individual-level data in the NCI secure cloud environment.