National Childhood Cancer Registry

The National Childhood Cancer Registry (NCCR) is part of NCI's Childhood Cancer Data Initiative (CCDI), which is building a community centered around childhood cancer care and research data. Through enhanced data sharing, we can improve our understanding of cancer biology to improve preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer. CCDI will help speed progress for children and adolescents and young adults (AYAs) with childhood cancer and their families. Sign-up for email updates from NCI about CCDI.

The 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 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.

U.S. map showing the locations of the 28 NCCR registries and VPR-linked Registries. The follow states and areas highlighted as NCCR registries: NY, MA, CT, PA, NJ, OH, KY, TN, GA, FL, IL, IA, WI, MO, AR, LA, TX, CO, NM, UT, ID, MI, CA
(including Greater Bay, Los Angeles), OR, Seattle-Puget Sound, and HI. The following states and areas are highlighted as VPR-linked Registries: Alaska, Indiana, Maine, Montana, Nevada, Oklahoma, and Puerto Rico — Map of the 28 NCCR Participating Registries

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, social determinants of health, 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.

About the Current NCCR Data Release

Data from up to 28 of the NCCR registries
Represents 75% of the U.S. population aged 0-39
Includes 1,897,938 reported cases under age 40 (1995-2021)

Future Plans

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).