About the Childhood Cancer Data Initiative (CCDI)

While childhood cancers are the leading cause of death by disease in children over the age of 1, they are collectively rare. Childhood cancers make up about 1%‒3% of cancers diagnosed annually in the United States. Information on diagnosis, treatment, and outcomes is often stored at the hospital or institution where a child is treated, making it difficult to answer scientific questions about childhood cancers.

CCDI is working to connect and share clinical care and research data generated by children’s hospitals, clinics, or networks with the broader community. By doing so, we can learn faster and on a much larger scale than any single institution caring for children, adolescents, and young adults (AYAs) can learn on its own.

A national commitment

CCDI represents an ambitious effort in data collection, sharing, analysis, and access. In 2019, NCI hosted a symposium and developed an ad hoc Board of Scientific Advisors working group who provided recommendations for the future of the initiative. It is a $50 million federal investment made in each fiscal year since 2020, with an additional $50 million proposed each fiscal year for a total of 10 years. These funds allow NCI to bring the nation’s childhood cancer research, advocacy, and care communities together in this endeavor.

The Childhood Cancer Data Initiative (CCDI) is building a community centered around childhood cancer care and research data. Advocates and researchers within the pediatric cancer community discuss the CCDI and share its importance, goals and potential outcomes for treating children and AYAs with cancer.

How CCDI is structured

A blue cloud labeled "CCDI" with different colored lines running from the cloud to a 4-piece puzzle depicting a photo of a child smiling at a doctor on it. Each puzzle piece represents some areas of focus for CCDI — View and Print Infographic

For CCDI to be successful, it requires the engagement of the entire childhood cancer care and research community. To enable broad participation, CCDI is organized into task forces that include diverse representation from the childhood cancer community (experts from within and outside NCI), including advocates, pediatric oncologists, researchers, and data scientists that represent the children, adolescents, and young adults served.

Task forces

We are forming task forces whose focus is making progress in CCDI priority areas. Each task force has a set of goals and objectives, which we will work to accomplish using consistent approaches and with the resources available to CCDI. Topics covered by task forces include the following, with more to come:

CCDI Rare Cancer Initiative
Common data elements
Genomic data harmonization
Molecular characterization
Pediatric disease ontology

Additional information will be added here as task forces develop.