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
Authors: Flores-Toro Joseph A. , Jagu Subhashini , Armstrong Gregory T. , Arons David F. , Aune Gregory J. , Chanock Stephen J. , Hawkins Douglas S. , Heath Allison , Helman Lee J. , Janeway Katherine A. , Levine Jason E. , Miller Ellyn , Penberthy Lynne , Roberts Charles W. M. , Shalley Eve R. , Shern Jack F. , Smith Malcolm A. , Staudt Louis M. , Volchenboum Samuel L. , Zhang Jinghui , Zenklusen Jean Claude , Lowy Douglas R. , Sharpless Norman E. , Guidry Auvil Jaime M. , Kerlavage Anthony R. , Widemann Brigitte C. , Reaman Gregory H. , Kibbe Warren A. , Doroshow James H. ,   on behalf of Childhood Cancer Data Initiative Working Groups, Aplenc Richard , Barrett Caitlyn W. , Bartley Naomi , Buenger Vicki , Cerami Ethan , Cohn Susan L. , Colace Susan I. , Cost Carrye R. , Crompton Brian D. , Davidsen Tanja M. , Diskin Sharon J. , Bloyd Jamie Ennis , Forrest Suzanne J. , Fouladi Maryam , Gajjar Amar , Bender Julia Glade , Goodman Nancy , Gramatges Maria M. , Greene Casey S. , Guillot Julie A. , Haddock Amanda P. , Haendel Melissa A. , Hill D. Ashley , Hwang Amie E. , Kaas-Hogan Daphne , Kolb Edward A. , Kung Andrew L. , La Rosa Salvatore , Laetsch Theodore W. , Lawlor Elizabeth R. , Lupo Philip J. , McEachron Troy A. , McLeod Clay , McWeeney Shannon K. , Mesirov Jill P. , Milberg Sarah , Olshan Andy F. , Painter Corrie , Parsons Donald W. , Reichard-Eline Aubrey , Reilly Karlyne M. , Resnick Adam C. , Sandler Abby B. , Seibel Nita L. , Shah Nilay , Siegel David A. , Spector Logan G. , Sweet-Cordero Alejandro , Tomlinson Gail E. , Tonorezos Emily S. , Tricoli James V. , Vaske Olena M. , Wedekind Malone Mary Frances , Weil Brent R. , Yock Torunn 
Published: June 2023

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.