The Trajectory of Pediatric Cancer Data and Collection in the United States

J Registry Manag. 2023 Fall;50(3):82-84.

Abstract

The past several years have been marked by substantial growth in pediatric cancer data and collection across the world. In the United States, multiple projects and standard setters have laid a foundation for the growth of this data, and the need for an overview and explanation of a few of the programs directly relevant to cancer registrars has become apparent. This article will discuss 3 initiatives that highlight many of the efforts and intricacies involved with the collection of pediatric cancer data in the cancer registry world: the National Childhood Cancer Registry, the Toronto Pediatric Cancer Stage Guidelines, and the Pediatric Site-Specific Data Items Work Group.

Keywords: National Childhood Cancer Registry (NCCR); Pediatric Site-Specific Data Items (SSDI) Work Group; cancer registry; data collection; pediatric cancer data.

MeSH terms

  • Child
  • Data Collection
  • Data Management
  • Humans
  • Neoplasm Staging
  • Neoplasms* / epidemiology
  • Neoplasms* / pathology
  • Registries
  • United States / epidemiology