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National Childhood Cancer Registry (NCCR)

Organization: National Cancer Institute

This dataset contains 2 distinct basic statistics and separate condition concept counts. Select from the buttons below to access each version of the Basic Statistics and Condition Concept Counts. Condition concept counts are not available for NCCR in SEER*Stat

NCCR Data Platform

NCCR in SEER*Stat

Description

The National Childhood Cancer Registry (NCCR) is a US based cancer registry operated by the National Cancer Institute (NCI) that includes data from individuals with an initial cancer diagnosis, under age 40, residing in any of the NCCR registries for cancers. The data represents 75% of all U.S. children and adolescents and young adults (AYAs) diagnosed with cancer. Registries contribute data to different data products based on the access tier for how data are released to the public and researchers, from fully open-access to controlled access data products. Data are de-duplicated across different state and central cancer registries then real-world health care data are matched for the same person across different sources to compile data products. The NCCR Data Platform consolidates registry and real-world data in one place where researchers can easily search, visualize, and request de-identified data. Researchers can explore and request data from various sources (e.g., pharmacy and medical claims, area-based measures, clinical trials partners, Virtual Pooled Registry, and Electronic Health Record [EHR] systems and other clinical information systems from treating facilities) that provide more in-depth information on the patient's cancer journey and survivorship. The NCCR Data Platform is ideally suited to helping researchers visualize aggregate statistics about available data for hypothesis generation and planning study designs.

NCCR data product tools include NCCR*Explorer, NCCR database in SEER*Stat, and the NCCR Data Platform and can be found for comparison here: NCCR Data Products. Researchers must submit an application for a SEER Research Plus access level to use NCCR data in SEER*Stat or the Data Platform. For more information on SEER please visit our SEER dataset profile.

Key Information

Dataset Contents
Update Status Active
Dataset Type Registry
Context Not Applicable
Region United States
Age Restrictions 0-39 years at first cancer, subsequent cancers for the same population at later ages
Access & Availability
Native Data Structure Custom
Hosting Registry data in the SEER*Stat application; De-identified individual-level data from all data sources through the NCCR Data Platform.
Database File Size Not Applicable
Availability Restrictions Requires eRA Commons or an HHS account and SEER Research Plus application
Data Identifiability HIPAA: De-identifiable, Common Rule: De-identified

Database Contents

  NCCR*Explorer NCCR in SEER*Stat NCCR Data Platform
Participating Registries 28 NCCR Registries 20 States and Seattle 22 SEER Registries
Cancer Case Counts 1,897,938 1,418,577 1,433,710
Population Coverage (% of U.S. ages 0-39) 75% 59% 58%
Years of Diagnosis 2001-2021 1997-2021 1995-2021
Data Sources NAACCR CiNA submissions NAACCR CiNA submissions Multiple sourcesǂ
Types of Analyses Incidence, Survival, and Prevalence by patient demographics and cancer type Frequencies, Rates, Survival, Prevalence Descriptive statistics of registry and linked real-world data; Receive de-identified individual-level data, import scripts, and data dictionaries for us in statistical analytic software

ǂ Links data from population-based cancer registries and real-world data partners. Nationally de-duplicated between registries and across all data sources (About the NCCR Data Platform - NCCR Data Platform)

Data Dictionary

Dataset Publications

  • Hill SM, Michels FS, Knight K, Goderre JL, Terranova T, Hayes T, Kohler B. Harnessing the Power of Cancer Registries to Advance Our Understanding of Pediatric Cancer. J Registry Manag. 2023 Fall;50(3):80-81. PMID: 37941743; PMCID: PMC10629798.

Last updated Sep 22, 2025