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Childhood Cancer Data Initiative (CCDI)

Antonia, a pediatric cancer patient, is examined by Rosandra Kaplan, M.D. (center) and a clinical fellow with the NCI Center for Cancer Research's Pediatric Oncology Branch.

Credit: Rhoda Baer

The Childhood Cancer Data Initiative (CCDI) focuses on the critical need to collect, analyze, and share data to address the burden of cancer in children, adolescents, and young adults (AYAs). The initiative supports childhood cancer research and aims to make it easier for researchers to learn from each of the approximately 16,000 children and adolescents diagnosed with cancer in the United States each year.

Tissue samples from patients with cancer in this age group are critically limited and a valuable resource. Data generated from these specimens are often fragmented and not broadly available to researchers and oncology teams. Maximizing the use of childhood and AYA cancer biospecimens and the resulting data will have a profound impact on our ability to prevent, diagnose, and treat this patient population, and can serve as a model for improving the use of data across cancer types and other disease continuums.

The CCDI is a proposed federal investment of $50 million per year for the next 10 years. The first year of the initiative was funded in December 2019. These funds will allow NCI to enhance data collection for childhood cancers, ensure that data is accessible, and thereby incentivize the cancer research community to develop new treatments for children with cancer.

To increase data use and sharing in pursuit of progress against childhood cancers, the CCDI aims to:

  • Maximize every opportunity to improve treatments and outcomes for children with cancer
  • Build a connected data infrastructure to enable sharing of childhood cancer data from multiple sources
  • Identify opportunities to make data work better for patients, clinicians, and researchers
  • Develop and enhance tools and methods to extract knowledge from data

Childhood Cancer Data Initiative: Sharing, A Life Lesson

NCI has started the following tasks in alignment with CCDI goals: 

  • Create and maintain a resource catalog for reference to and reuse of data, biospecimens, and tools
  • Create a framework that will allow various types of childhood cancer and clinical care data to be connected 
  • Expand comprehensive data collection of childhood cancer and survivorship research
  • Develop a National Childhood Cancer Registry
  • Support ongoing research to develop a preclinical data commons for childhood cancers

The NCI Board of Scientific Advisors (BSA) has convened a Working Group to provide general guidance for the CCDI. The Working Group will present an initial report to NCI in June 2020. 

NCI is committed to a cultural shift in enhanced data sharing. 

  • NCI has lifted the publication embargo on osteosarcoma data from the TARGET study, allowing investigators to more efficiently publish broad results and to align with NCI’s commitment to data sharing in general. 
  • NCI continues to enhance data sharing and publication policies to promote broad, timely, and open access to data and journal articles without paywall. For policies that affect NCI data sharing, visit the NCI Office of Data Sharing page. 

NCI will post CCDI funding opportunity announcements to this page when they are available.  
 

  • Updated:

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