Summer 2021 NAACCR Narrative Leave a comment

Stephanie M. Hill, MPH, CTR
Associate Director




Introducing the National Childhood Cancer Registry
Cancers among children, adolescents, and young adults pose unique challenges and opportunities in the realm of public health surveillance. The rarity of pediatric cancers often poses a barrier to state-by-state investigation and analysis into issues of late effects, recurrence, subsequent malignant neoplasms, and other outcomes. In 2019, the National Cancer Institute’s (NCI) Childhood Cancer Data Initiative (CCDI) Symposium identified “a critical need to collect, analyze, and share data to address the burden of cancer in children, adolescents and young adults.” Following the symposium, the NCI initiated the National Childhood Cancer Registry (NCCR), which, with NAACCR serving as the coordinating center, aims to build a connected data infrastructure that includes longitudinal data from multiple sources and enables secure sharing and indexing of childhood cancer data with vetted research investigators.

The NCCR builds upon the existing infrastructure among both SEER and NPCR central registries, as well as the Virtual Pooled Registry (VPR), to securely match patients across registries and with external data sources such as genomic data, medical and pharmacy claims, and other novel sources for residential history, financial toxicity and social determinants of health. These linkages will enable researchers to address issues surrounding late effects of cancer treatment, recurrence, subsequent malignant neoplasms, and other critical outcomes.

The NCCR currently includes data from 23 states for patients diagnosed at age 19 and younger from 1995 through 2017. Preliminary inter-state matching among a subset of registries identified 380 duplicate primaries (same primary reported by two or more registries) and 172 subsequent primaries reported by another state, highlighting the importance of inter-registry linkages.

Data from the NCCR will be used to produce publicly-available ready statistics and canned analyses similar to those currently available for traditional SEER data. Additional data products are planned, with access restricted to authorized researchers with IRB approval.


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