National Childhood Cancer Registry

Overview

Childhood cancer patients comprise a special and understudied population of cancer patients. Approximately 15,000 childhood cancer patients are diagnosed in the United States annually, compared with the 1.7 million new cancer cases diagnosed each year. Due to their rare nature, it has been challenging to collect substantial and vital information on a large scale to study and understand the needs for this unique population of cancer patients.

The Childhood Cancer Data Initiative (CCDI) symposium hosted by the National Cancer Institute (NCI) in July 2019 identified a critical need to collect, analyze, and share data to address the burden of cancer in children, adolescents and young adults. Currently, cancer registries in the United States hold structured information on every cancer case, including childhood cancers, within their respective catchment area. For childhood cancer patients and survivors, issues of late effects, recurrence, subsequent primary cancers, and follow-up are critically important to consider while addressing common instances of survivors moving to different states as these survivors mature and become adults. Using the data from registries as a base, an infrastructure that brings together key information on every childhood cancer patient is being constructed and will be maintained to support research on childhood cancer patients and survivors.

The National Childhood Cancer Registry (NCCR) is envisioned as a connected data infrastructure to enable sharing of childhood cancer data from multiple and heterogeneous data sources. Incorporating available data on genomic and tumor characterization, residential history, social determinants of health and measures of financial toxicity, longitudinal treatments including oral agents, and longitudinal outcomes data including recurrence and subsequent cancers can enhance the core infrastructure of registry data on pediatric patients. Because the basis for the NCCR is existing central cancer registries, personally identifiable information (PII) is reportable to the central registry to permit longitudinal linkage and reporting to central registries is HIPAA exempt. The NCCR will 1) support relevant research on childhood cancers; 2) provide a potential sampling frame for additional research; and 3) provide a population level set of data on all childhood cancer patients, including patients who do not participate in clinical trials.