Journal of Clinical Oncology: 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 (Aune Co-author)
Joseph A. Flores-Toro , PhD1; Subhashini Jagu , PhD1; Gregory T. Armstrong, MD, MSCE2; David F. Arons, JD3; Gregory J. Aune, MD, PhD4; Stephen J. Chanock , MD1; Douglas S. Hawkins , MD5; Allison Heath , PhD6; Lee J. Helman , MD7; Katherine A. Janeway , MD, MMSc8; Jason E. Levine , MD1; Ellyn Miller, BS9; Lynne Penberthy, MD1; Charles W. M. Roberts , MD, PhD2; Eve R. Shalley, BA10; Jack F. Shern , MD1; Malcolm A. Smith , MD, PhD1; Louis M. Staudt , MD, PhD1; Samuel L. Volchenboum , MD, PhD11; Jinghui Zhang , PhD2; Jean Claude Zenklusen, PhD1; Douglas R. Lowy, MD1; Norman E. Sharpless , MD1; Jaime M. Guidry Auvil, PhD1; Anthony R. Kerlavage , PhD1; Brigitte C. Widemann , MD1; Gregory H. Reaman , MD12; Warren A. Kibbe , PhD13; and James H. Doroshow , MD1; on behalf of Childhood Cancer Data Initiative Working Groups
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 a greater understanding of pediatric cancers, improve survivorship, and accelerate the 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 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 benefits 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.
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Since 2004, UT Health San Antonio, Greehey Children’s Cancer Research Institute’s (Greehey CCRI) mission has been to advance scientific knowledge relevant to childhood cancer, contribute to understanding its causes, and accelerate the translation of knowledge into novel therapies. Greehey CCRI strives to have a national and global impact on childhood cancer by discovering, developing, and disseminating new scientific knowledge. Our mission consists of three key areas — research, clinical, and education.
Stay connected with the Greehey CCRI on Facebook, Twitter, LinkedIn, and Instagram.
Since 2004, UT Health San Antonio, Greehey Children’s Cancer Research Institute’s (Greehey CCRI) mission has been to advance scientific knowledge relevant to childhood cancer, contribute to understanding its causes, and accelerate the translation of knowledge into novel therapies. Greehey CCRI strives to have a national and global impact on childhood cancer by discovering, developing, and disseminating new scientific knowledge. Our mission consists of three key areas — research, clinical, and education.
Stay connected with the Greehey CCRI on Facebook, Twitter, LinkedIn, and Instagram.