National Childhood Cancer Registry
The National Childhood Cancer Registry (NCCR) is a rapidly growing public health surveillance data resource. Its primary goal is to provide a platform to better understand the causes, outcomes, effective treatments, and later effects of cancer among children, adolescents, and young adults in the U.S. Developed under the NCI Childhood Cancer Data Initiative (CCDI), the NCCR contributes to the CCDI data ecosystem by serving as a linked infrastructure of central cancer registry data that will integrate various other childhood cancer data—from hospitals, research centers, heath care administrations, and other sources—to enhance access to and utilization of childhood cancer and survivorship data. The NCCR uses the Virtual Pooled Registry Cancer Linkage System to link multiple cancer registries and generate an accurate count of childhood cancer cases by combining information that appears in more than one registry.
The NCCR will be updated annually with newly diagnosed cases. NCCR plans to continuously expand its capacity through linkages to externally available data to enhance its database with genomic and tumor characteristics, longitudinal treatment information, indicators of cancer recurrence, and coexisting adverse health conditions.
The NCCR aims to serve the cancer surveillance and registry community, clinicians, researchers, policy makers, educators, and patients and their families by:
- providing accurate counts and trends of childhood cancer incidence and survival,
- supporting research on childhood cancer through potential sampling and data provision, and
- enriching the value of rare and limited childhood cancer data through linkages and clinical applications.
The Centers for Disease Control and Prevention (CDC) and the National Cancer Institute have complementary initiatives to improve surveillance activities that inform our scientific understanding of pediatric cancer. Read more about plans to collaborate in the NCCR and STAR Overview: CDC and NCI Collaborate on Unique Initiatives for Pediatric Cancer Research (PDF).
NCCR Data in SEER*Stat
A limited set of data from the NCCR-participating registries will be available through SEER*Stat beginning in summer 2023. This file will display the results of statistical analytic features already in SEER*Stat, but will not display case-level or patient-level data or be available for download. The NCCR file released through SEER*Stat will be updated each year to incorporate data from the prior year's submission of newly diagnosed cancer patients.
NCCR Data Platform
The NCCR Data Platform will support initial cohort discovery where users can search groups of patients by detailed search criteria, such as ICCC, age at diagnosis, and the length of time of survival. If a researcher has a specific cohort of interest, the researcher can request a custom data file in the NCCR Data Platform's data access process. Data available via the NCCR Data Platform will include population-based cancer registry data linked with other data sources for longitudinal, detailed treatment, procedures, and outcomes. Detailed, linked data will be available through the NCCR Data Platform for request by 2024.