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

Flores-Toro JA, Jagu S, Armstrong GT, Arons DF, Aune GJ, Chanock SJ, Hawkins DS, Heath A, Helman LJ, Janeway KA, Levine JE, Miller E, Penberthy L, Roberts CWM, Shalley ER, Shern JF, Smith MA, Staudt LM, Volchenboum SL, Zhang J, Zenklusen JC, Lowy DR, Sharpless NE, Guidry Auvil JM, Kerlavage AR, Widemann BC, Reaman GH, Kibbe WA, Doroshow JH. 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. J Clin Oncol. 2023 Aug 20;41(24):4045-4053. doi: 10.1200/JCO.22.02208. Epub 2023 Jun 2. PubMed PMID: 37267580; PubMed Central PMCID: PMC10461939.

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.