The Childhood Cancer Data Initiative: Using the Power of Data to Learn From and Improve Outcomes for Every Child and Young Adult With Pediatric Cancer

Abstract

Data-driven basic, translational, and clinical research has resulted in improved outcomes for children, adolescents, and young adults (AYAs) with pediatric cancers. However, challenges in sharing data between institutions, particularly in research, prevent addressing substantial unmet needs in children and AYA patients diagnosed with certain pediatric cancers. Systematically collecting and sharing data from every child and AYA can enable greater understanding of pediatric cancers, improve survivorship, and accelerate development of new and more effective therapies. To accomplish this goal, the Childhood Cancer Data Initiative (CCDI) was launched in 2019 at the National Cancer Institute. CCDI is a collaborative community endeavor supported by a 10-year, $50-million (in US dollars) annual federal investment. CCDI 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. For example, CCDI's Molecular Characterization Initiative provides comprehensive clinical molecular characterization for children and AYAs with newly diagnosed cancers. Through these efforts, the CCDI strives to provide clinical benefit to patients and improvements in diagnosis and care through data-focused research support and to build expandable, sustainable data resources and workflows to advance research well past the planned 10 years of the initiative. Importantly, if CCDI demonstrates the success of this model for pediatric cancers, similar approaches can be applied to adults, transforming both clinical research and treatment to improve outcomes for all patients with cancer.

FIG 1.

CCDI Working Group structure: The CCDI Working Groups provide important feedback on the crucial areas on which the initiative should focus. The Cohort Working Group is tasked with developing strategies and a series of initiatives (eg, capture historical data and ensure it is accessible and interoperable with the prospective data) to gather data from every patient diagnosed with a pediatric cancer in the United States. The Protocol Working Group provides expert guidance for the MCI screening protocol. The Cross-Cutting Working Group is focused on ensuring the effective collaboration, communication, and coordination of all activities for the CCDI. The Platform Working Group defines a strategy and approach for federating and/or integrating data to enable integrated analytics and incentivize researchers to use the data in new ways. CCDI, Childhood Cancer Data Initiative; MCI, Molecular Characterization Initiative.

FIG 2.

CCDI activities over the first 3 years: Broad categorical breakdown of the first 3 years of CCDI activities. Roughly equal funding contributions have been made to each of these objectives over the first 3 years. CCDI, Childhood Cancer Data Initiative; EHR, electronic health record; NCCR, National Childhood Cancer Registry; RPG, research project grant.