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Childhood Cancer Data Initiative (CCDI)

Two girls with ALL receiving chemotherapy

Two young girls with acute lymphocytic leukemia (ALL) receiving chemotherapy. 

Credit: Bill Branson

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 maximizing the use and benefit of data from childhood and AYA cancer research for patients and survivors 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 in different databases and not broadly available to researchers and oncology teams. Optimizing 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 federal investment of $50 million proposed to be extended in equal amounts 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 sharing, collection, analysis, and access for ongoing and planned childhood and AYA cancer and survivorship research throughout the Institute.

Childhood Cancer Data Initiative Vision

The CCDI vision is to make valuable information from children, adolescents and young adults with cancer work better for everyone. We will do this, in part by establishing a data “ecosystem” of connected repositories, registries, and tools that the entire childhood and AYA cancer research community can access and share. Information that is aggregated and well-curated will make it easier to access and use and to learn from every child.

CCDI’s goal is to maximize every opportunity to improve treatments and outcomes for children and AYAs with cancer. To increase data use and sharing in pursuit of progress against childhood and AYA cancers, the CCDI aims to:

  • Establish a connected data infrastructure of repositories, registries, and tools to enable sharing of childhood and AYA cancer data from multiple sources
  • Create meaningful datasets that have the proper information about each patient to generate novel discoveries as well as comprehensively address key questions in childhood and AYA cancers
  • Identify opportunities to make data work better for patients, clinicians, and researchers
  • Develop and enhance tools and methods to extract knowledge from data so different types of questions can be adequately addressed

Current Childhood Cancer Data Initiative Activities

NCI has allocated funding for the CCDI in 2020 to a range of research activities in childhood and AYA cancer and survivorship through grants, contracts, and administrative supplements. The CCDI 2020 activities are building a foundation for data sharing, analysis, and access that will support and enhance childhood and AYA cancer and survivorship research in future years’ activities. In 2020, NCI has started the following tasks in alignment with CCDI’s goals:

  • Conduct a landscape analysis of existing childhood and AYA cancer data, tools and repositories that can be connected under the CCDI
  • Develop the National Childhood Cancer Registry (NCCR), a part of the CCDI data ecosystem, to enhance access to patient-linked childhood and AYA cancer and survivorship data
  • Support ongoing research to develop a preclinical data commons for childhood cancers
  • Establish a framework, or technical infrastructure, that will allow various types of childhood cancer and clinical care data and tools, including the NCCR and preclinical data commons, to be connected to one another
  • Create and maintain a resource catalog for reference to and reuse of data, biospecimens, and tools
  • Expand comprehensive data collection to involve more institutions engaged in childhood cancer and survivorship research
  • NCI lifted the publication embargo on osteosarcoma data from the TARGET study to allow researchers to more efficiently publish results.
  • NCI continues to enhance data sharing and publication policies to promote open access to data and journal articles without paywall. For policies that affect NCI data sharing, visit the NCI Office of Data Sharing page.

Childhood Cancer Data Initiative: Sharing, A Life Lesson

Drs. Douglas Lowy and Brigitte Widemann discuss the importance of expanding access to data from children, adolescents and young adults (AYAs) with cancer. Learn more about how sharing and aggregating data can help doctors, researchers, and scientists improve future outcomes for children and AYAs with cancer. 

NCI convened an ad hoc working group under the Board of Scientific Advisors (BSA) to provide general guidance to NCI regarding considerations for future CCDI priorities. The CCDI Working Group presented its report to the BSA at the June 15, 2020 meeting and it was unanimously accepted. NCI is now carefully reviewing the Working Group report and its recommendations and will provide an update on its CCDI plans and priorities at the September 1, 2020 National Cancer Advisory Board (NCAB) meeting.

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

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