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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.

Publication ,  Journal Article
Flores-Toro, JA; Jagu, S; Armstrong, GT; Arons, DF; Aune, GJ; Chanock, SJ; Hawkins, DS; Heath, A; Helman, LJ; Janeway, KA; Levine, JE ...
Published in: J Clin Oncol
August 20, 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.

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Published In

J Clin Oncol

DOI

EISSN

1527-7755

Publication Date

August 20, 2023

Volume

41

Issue

24

Start / End Page

4045 / 4053

Location

United States

Related Subject Headings

  • Young Adult
  • United States
  • Oncology & Carcinogenesis
  • Neoplasms
  • National Cancer Institute (U.S.)
  • Humans
  • Ecosystem
  • Data Collection
  • Child
  • Adolescent
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Flores-Toro, J. A., Jagu, S., Armstrong, G. T., Arons, D. F., Aune, G. J., Chanock, S. J., … Childhood Cancer Data Initiative Working Groups, . (2023). 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, 41(24), 4045–4053. https://doi.org/10.1200/JCO.22.02208
Flores-Toro, Joseph A., Subhashini Jagu, Gregory T. Armstrong, David F. Arons, Gregory J. Aune, Stephen J. Chanock, Douglas S. Hawkins, et al. “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 41, no. 24 (August 20, 2023): 4045–53. https://doi.org/10.1200/JCO.22.02208.
Flores-Toro JA, Jagu S, Armstrong GT, Arons DF, Aune GJ, Chanock SJ, et al. 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):4045–53.
Flores-Toro, Joseph A., et al. “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, vol. 41, no. 24, Aug. 2023, pp. 4045–53. Pubmed, doi:10.1200/JCO.22.02208.
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, Childhood Cancer Data Initiative Working Groups. 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.

Published In

J Clin Oncol

DOI

EISSN

1527-7755

Publication Date

August 20, 2023

Volume

41

Issue

24

Start / End Page

4045 / 4053

Location

United States

Related Subject Headings

  • Young Adult
  • United States
  • Oncology & Carcinogenesis
  • Neoplasms
  • National Cancer Institute (U.S.)
  • Humans
  • Ecosystem
  • Data Collection
  • Child
  • Adolescent