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 enhanced data sharing, we can improve our understanding of cancer biology to improve preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer.

While childhood cancers represent the leading cause of death by disease in children over the age of 1, they are collectively rare, comprising 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 cancer.

Sharing clinical care and research data generated by children’s hospitals, clinics, or networks broadly with the community can help us learn faster and on a scale much larger than any single institution caring for children can learn on its own.

CCDI Goals

CCDI has three foundational goals:

1. gather data from every child, adolescent, and young adult 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