# Childhood Cancer Data Initiative (CCDI)

Source: https://onco.cc/collections/ccdi/  
OnCo record `ccdi` (Collection). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

A US National Cancer Institute programme that gathers data on every child, teenager and young adult with cancer into shared resources, and pays for free tumour testing at diagnosis for some childhood cancers so that doctors can choose treatment and trials.

## Summary

The NCI describes CCDI as building a community around childhood cancer care and research data, with three aims: to gather data from every child, adolescent and young adult diagnosed with a childhood cancer regardless of where they are treated; to create a national strategy for clinical and molecular characterisation to speed diagnosis and inform treatment; and to build a platform that brings clinical care and research data together. NCI states it is a $50 million federal investment made in each fiscal year since 2020, with an additional $50 million proposed each year for a total of ten years. The CCDI Hub is the entry point to the Childhood Cancer Clinical Data Commons, the Childhood Cancer Data Catalog and the Molecular Targets Platform.

Its Molecular Characterization Initiative offers DNA and RNA testing of tumour and blood at no cost to children and AYAs newly diagnosed with a central nervous system tumour, soft tissue sarcoma, high-risk neuroblastoma, a listed rare tumour, or metastatic Ewing sarcoma and treated at a Children's Oncology Group hospital, with results returned to the family and doctor; de-identified data are then shared with researchers. NCI also runs a CCDI Rare Cancer Study.

## Fields

- Kind: Collection
- Last checked: 2026-11-04
- Also known as: CCDI; NCI Childhood Cancer Data Initiative; CCDI Hub; CCDI Molecular Characterization Initiative
- Tags: research-funding; data
- URL: https://www.cancer.gov/research/areas/childhood/childhood-cancer-data-initiative
- Holds: Childhood, adolescent and young adult cancer data gathered through the CCDI Data Ecosystem: the Childhood Cancer Clinical Data Commons, the Childhood Cancer Data Catalog, the Molecular Targets Platform, and controlled-access molecular data from the Molecular Characterization Initiative, with open-access H&E images.
- Licence: Mixed: controlled access for Molecular Characterization Initiative molecular data; open access for its stained tissue images

## Notes

- Funding and eligibility from the NCI pages read on 4 November 2026. The number of children enrolled in the Molecular Characterization Initiative was not stated there and is not given.

## Sources

- NCI: Childhood Cancer Data Initiative: https://www.cancer.gov/research/areas/childhood/childhood-cancer-data-initiative
- About CCDI: https://www.cancer.gov/research/areas/childhood/childhood-cancer-data-initiative/about
- CCDI Molecular Characterization Initiative: https://www.cancer.gov/research/areas/childhood/childhood-cancer-data-initiative/molecular-characterization

## Connected records

- collections: [NCI Cancer Research Data Commons (CRDC)](https://onco.cc/collections/crdc/)
- cancers: [Childhood cancers (all types)](https://onco.cc/cancers/childhood-cancers/), [Ewing sarcoma](https://onco.cc/cancers/ewing-sarcoma/), [Neuroblastoma (paediatric)](https://onco.cc/cancers/neuroblastoma/)
- companies: [Children's Oncology Group (COG)](https://onco.cc/companies/childrens-oncology-group/)
- institutions: [National Cancer Institute (NIH)](https://onco.cc/institutions/nci/)
- terms: [Adolescent and young adult (AYA) oncology](https://onco.cc/terms/aya-oncology/)
- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Rare and paediatric cancers without markets](https://onco.cc/bottlenecks/b-rare-cancers/)

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JSON: https://onco.cc/api/v1/entities/ccdi.json