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Building Pediatric Cancer Cohorts and Accessing Data Using Childhood Cancer Data Initiative Tools
Subhashini Jagu1, Jaime M Guidry Auvil1, Mark Cunningham2
1Office of Data Sharing, National Cancer Institute, Rockville, MD.
JCO Clinical Cancer Informatics
|December 10, 2025
Summary
The Childhood Cancer Data Initiative (CCDI) offers tools and resources for accessing and analyzing diverse pediatric cancer data. This facilitates research to improve understanding, treatment, and outcomes for childhood cancers.
Area of Science:
- Pediatric Oncology
- Cancer Genomics
- Data Science in Medicine
Background:
- Advancing understanding of childhood, adolescent, and young adult cancers requires comprehensive data sharing.
- The National Cancer Institute's Childhood Cancer Data Initiative (CCDI) addresses this need by providing access to a vast repository of diverse cancer data.
Purpose of the Study:
- To outline the process of finding, requesting, accessing, downloading, and analyzing data within the CCDI Data Ecosystem.
- To highlight the role of the CCDI Hub Explore Dashboard and Childhood Cancer Clinical Data Commons (C3DC) in accelerating pediatric cancer research.
Main Methods:
- Utilizing cohort-based analysis supported by CCDI resources.
- Employing standardized data models for study, participant, sample, diagnosis, and treatment data, updated collaboratively.
- Leveraging a drafted Pediatric Cancer Core common data elements list for standardized research references.
Main Results:
- The CCDI Hub serves as the central access point for CCDI data, tools, and applications.
- The C3DC offers harmonized, participant-level clinical data, while the CCDI Hub Explore Dashboard catalogs file-level data.
- Users can search, download data manifests, and build cohorts using harmonized, de-identified participant data.
Conclusions:
- CCDI emphasizes data accessibility and interoperability to foster pediatric cancer research discovery.
- CCDI resources and data support data-driven insights and enhance collaboration within the pediatric cancer research community.
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