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

• DOI: 10.1200/jco.22.02208
• Publication Date: 2023-06-02T20:07:12Z
• Authors: Joseph A. Flores-...; Subhashini Jagu; Gregory T. Armstrong; David F. Arons; Gregory J. Aune; Stephen J. Chanock; Douglas S. Hawkins; Allison Heath; Lee J. Helman; Katherine A. Janeway; Jason E. Levine; Ellyn Miller; Lynne Penberthy; Charles W. M. Rob...; Eve R. Shalley; Jack F. Shern; Malcolm A. Smith; Louis M. Staudt; Samuel L. Volchen...; Jinghui Zhang; Jean Claude Zenkl...; Douglas R. Lowy; Norman E. Sharpless; Jaime M. Guidry A...; Anthony R. Kerlavage; Brigitte C. Widemann; Gregory H. Reaman; Warren A. Kibbe; James H. Doroshow; ; Richard Aplenc; Caitlyn W. Barrett; Naomi Bartley; Vicki Buenger; Ethan Cerami; Susan L. Cohn; Susan I. Colace; Carrye R. Cost; Brian D. Crompton; Tanja M. Davidsen; Sharon J. Diskin; Jamie Ennis Bloyd; Suzanne J. Forrest; Maryam Fouladi; Amar Gajjar; Julia Glade Bender; Nancy Goodman; Maria M. Gramatges; Casey S. Greene; Julie A. Guillot; Amanda P. Haddock; Melissa A. Haendel; D. Ashley Hill; Amie E. Hwang; Daphne Kaas-Hogan; Edward A. Kolb; Andrew L. Kung; Salvatore La Rosa; Theodore W. Laetsch; Elizabeth R. Lawlor; Philip J. Lupo; Troy A. McEachron; Clay McLeod; Shannon K. McWeeney; Jill P. Mesirov; Sarah Milberg; Andy F. Olshan; Corrie Painter; Donald W. Parsons; Aubrey Reichard-E...; Karlyne M. Reilly; Adam C. Resnick; Abby B. Sandler; Nita L. Seibel; Nilay Shah; David A. Siegel; Logan G. Spector; Alejandro Sweet-C...; Gail E. Tomlinson; Emily S. Tonorezos; James V. Tricoli; Olena M. Vaske; Mary Frances Wede...; Brent R. Weil; Torunn Yock
• Keywords: Translational Research; Pediatric cancer; Childhood Cancer; Data Sharing

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