Data in pediatric oncology: Something old, something new

Abstract

Pediatric oncology has a rich history of leveraging data. With each passing decade, outcomes for children with cancer have improved as a result of cooperative clinical trials. Systematic collection of data has been pivotal to transforming pediatric cancer from a uniformly fatal disease to one that is curable in 85% of cases. 1,2 In the next half century, clinical trials will continue to play a pivotal role in improving cure rates and minimizing late effects. What is new is that the data they generate are experiencing a coming of age. Not only are more data, including genomic data, being collected and analyzed, but the data lifecycle is evolving, with data becoming interoperable and increasingly shared and leveraged for secondary analyses.In this month's issue of Pediatric Blood and Cancer, Jagu and colleagues 3 provide an update on the United States National Cancer Institute (NCI) Childhood Cancer Data Initiative (CCDI). The CCDI is a federally funded half-billion USD investment over 10 years that aims to ". . . learn from every patient diagnosed with a pediatric cancer by designing and building a data ecosystem that facilitates data collection, sharing, and analysis for researchers, clinicians, and patients across the cancer community" 4 (Table 1).The most tangible and immediate impact of the CCDI has been increased access to pediatric cancer data by researchers worldwide.The National Childhood Cancer Registry (NCCR)*Explorer allows researchers to leverage cancer registry data on 1.5 million patients, representing 70% of children, adolescents, and young adults diagnosed with cancer in the United States. The Childhood Cancer Data Catalog (CCDC) is a comprehensive, up-to-date catalog of over 50 pediatric cancer data sharing resources. The Data Federation Project aims to link several of these datasets (including the Pediatric Cancer Data Com-