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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 would support childhood cancer research and aim 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 material 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. We are still in the early planning stages for the CCDI, and we are awaiting a final determination of NCI’s appropriation for fiscal year (FY) 2020. 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

As we await funding decisions, NCI is continuing to move forward in planning for the Initiative. Following is a status update on the CCDI. 

  • The NCI Board of Scientific Advisors has convened a Working Group to provide general guidance related to the development and implementation of the CCDI. The Working Group will hold its first meeting in early December.  
  • In September, NCI 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 pursue previously funded activities that contribute to the goals of the CCDI, including:
    • Create and maintain a resource catalog for reference to and reuse of data, biospecimens, and tools
    • Start a project to connect data repositories and registries that already hold NCI-funded pediatric, adolescent, and young adult cancer data
    • Develop a set of terminologies, data models of ontologies, and data elements that should be used to integrate across multiple datasets
    • Extend the utility of the Cancer Research Data Commons to support the data science infrastructure needed to support the CCDI, e.g., repositories for imaging and clinical trials 
    • Implement an enhanced data sharing and publication policy beginning with NCI Cancer Moonshot programs that promote broad, timely, and open access to data and journal articles without paywall
    • Link state cancer registry data and other data resources across the United States  

Regardless of the status of the $50 million funding request for the first year of the CCDI, NCI plans to continue with its broad portfolio of research initiatives in childhood cancer. Additional funding will expedite progress, but nothing will deter NCI from its ongoing research on pediatric cancer. 

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