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CCDI Progress

The Childhood Cancer Data Initiative (CCDI) represents a national commitment to harnessing and sharing data in ways to make faster progress in childhood cancers. The initiative has made significant progress on all its foundational goals and the work continues. The goals are:

  • gathering data from every child, adolescent, and young adult (AYA) diagnosed with a childhood cancer, regardless of where they receive their care
  • creating a national strategy of appropriate clinical and molecular characterization to speed diagnosis and inform treatment for all types of childhood cancers
  • developing a platform and tools to bring together clinical care and research data that will improve preventive measures, treatment, quality of life, and survivorship for childhood cancers

Childhood Cancer Data Initiative: Sharing, A Life Lesson

Drs. Douglas Lowy and Brigitte Widemann discuss the importance of expanding access to data from children and 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. 

Early Progress

Following CCDI’s launch, NCI brought together diverse groups from across the childhood cancer community and NCI’s advisory boards, committees, and working groups to gather information on what is needed to maximize the use of childhood cancer data. While building on recommendations from a report from the NCI Board of Scientific Advisors ad hoc working group for CCDI, NCI focused on strengthening existing childhood cancer research programs and developing systems and resources to support future CCDI activities.

What CCDI Is Accomplishing

Through working groups, events, and ongoing stakeholder engagement, CCDI is continuously gathering community input and aligning with the needs of patients, families, and researchers. The initiative is making progress to move childhood cancer research forward at NCI and beyond. A snapshot of that progress is given below.

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Developing a Data Infrastructure

To meaningfully connect and share childhood cancer data across the community, an infrastructure of data systems and user-friendly tools is required to find and access this information. The CCDI Data Ecosystem is a dynamic and evolving infrastructure that is bringing together data from various collections generated or held at institutions around the country and worldwide, ensuring its quality, and aligning or standardizing across the information so that it can be presented consistently back to the community.

Specific resources have also already been developed for the ecosystem with community input to make these data easier to find, use, and understand. These include the:

  • NCCR*Explorer, which links clinical patient data and was created out of the community desire for longitudinal, population-based information on young people with cancer. It is part of the National Childhood Cancer Registry.
  • Childhood Cancer Data Catalog, the first promised deliverable of CCDI. The community wanted a singular place to find information on what data are available and for the first time, this place now exists in the form of the data catalog.
  • Molecular Targets Platform, which meets the community need for gathering preclinical data that validates what drugs certain molecules involved in cancer growth respond to.

These tools are helping improve treatments for childhood cancers in alignment with the Research to Accelerate Cures and Equity (RACE) for Children Act and support structure and data collection for biobanking and survivorship studies in alignment with the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. More resources and enhancements will be developed as the CCDI Data Ecosystem continues to grow.

Foundational goals: gathering data from every child and AYA, developing a platform and tools

Bringing Together and Generating Childhood Cancer Data

Data is added into the CCDI Data Ecosystem from within NCI and from other health care institutions performing childhood cancer research. Additionally, CCDI funds organizations to share their data and incorporates these data in the ecosystem. 

One source of new clinical sequence data is the Molecular Characterization Initiative (MCI). Launched in March 2022, the initiative is a national collaboration of the childhood cancer community that is providing free, state-of-the-art molecular testing to children and AYAs with certain rare or hard-to-treat cancers, with plans to further expand.

MCI provides precise variant detection to enhance diagnoses quickly, enabling participants to get the best treatment. Over time, NCI expects comprehensive molecular characterization to become the standard of care for all children and AYAs with cancer, which can bring equity in the way childhood cancers are diagnosed and treated throughout the country. Through MCI, CCDI’s tumor tissue and blood biobanking also supports NCI childhood and AYA sample collection as part of the STAR Act. 

Foundational goals: gathering data from every child and AYA, creating a national strategy of appropriate clinical and molecular characterization

Learning from the Data

Comprehensive and meaningful data sets are necessary to learn from and develop better treatments and outcomes for all children and AYAs experiencing cancer. CCDI funding is supporting research studies and tools that drive our ability to use data effectively, including to establish cohorts that can help answer key scientific questions in childhood cancer. The initiative continues to evolve its programs, resources, and tools to make them as effective and helpful as possible, with community input and priorities in mind.

For more overview of CCDI’s progress, activities, and next steps as of the end of 2022, see the December 6, 2022, presentation* at the joint meeting of the NCI National Cancer Advisory Board and the NCI Board of Scientific Advisors.

*If you have trouble accessing or viewing these slides, please email us at NCIChildhoodCancerDataInitiative@mail.nih.gov.  

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