Childhood Cancer Data Initiative (CCDI)

NCI’s Childhood Cancer Data Initiative (CCDI) is building a community centered around childhood cancer care and research data. Through better data sharing, we can advance our understanding of cancer biology and improve childhood cancer diagnosis, treatment, quality of life, and survivorship. 

CCDI goals

CCDI has three foundational goals:

1. gather data from every child, adolescent, and young adult (AYA) diagnosed with a childhood cancer, regardless of where they receive their care
2. create a national strategy of appropriate clinical and molecular characterization to speed diagnosis and inform treatment for all types of childhood cancers
3. develop 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

Building programs and resources for the community

To achieve these goals, CCDI has programs like the CCDI Molecular Characterization Initiative to widen access to molecular testing and the CCDI Coordinated Pediatric and Young Adult Rare Cancer Initiative to address the need for a national effort to collect data on very rare childhood cancers. 

Accelerating medical advances requires childhood cancer data to be more readily accessible outside of where a child or AYA is treated. With that in mind, CCDI is also creating a data infrastructure with resources for the childhood cancer community. The core of this effort is the CCDI Data Ecosystem, which has user-friendly tools and platforms for finding, accessing, and analyzing childhood cancer data from NCI and other institutions.