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 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.

In 2020, 10 NCI-designated Cancer Centers were awarded supplemental funds to aggregate, integrate, and submit their existing data beyond traditional cancer abstracts on childhood cancer patients under 20 years of age receiving care at the cancer center to the NCCR in order to expand that infrastructure and ultimately support improved understanding of childhood cancer.

The addition of longitudinal data from Cancer Centers in alignment with the recommendations from Board of Scientific Advisors will support collaborations between Cancer Centers, local area providers, public health practitioners, and other public health professionals to utilize the centralized infrastructure (NCCR) to address questions related to childhood cancer patients with special attention to long term outcomes including recurrence and second primary cancers, detailed treatment information, and further characterization of the cancers.