The Childhood Cancer Data Initiative (CCDI), launched in 2019 at the National Cancer Institute, could provide a model for adults, authors write, “transforming both clinical research and treatment to improve outcomes for all patients with cancer.… Bidirectional community engagement and collaboration with all stakeholders will ensure all perspectives are incorporated and activities are aligned with the needs of research and care. The CCDI activities highlighted here are expected to continue and expand over the remaining years of the initiative.”
The group writes: “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, adolescents, and young adults] 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.”