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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.

Childhood Cancer Data Initiative (CCDI) Learning from Every Child

The Childhood Cancer Data Initiative (CCDI) is building a community centered around childhood cancer care and research data. Members of the pediatric cancer community discuss the CCDI and share its need, purpose, and aims to help all children, adolescents, and young adults with cancer.

While childhood cancers represent the leading cause of death 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

Engage with the Childhood Cancer Data Initiative

Sign up for CCDI email updates or reach out with questions.

 

  • About the CCDI

    Learn more about what CCDI is and the progress made so far.

  • Stories from the Community

    People from the CCDI community share their stories and discuss the importance of data sharing in childhood cancer.

  • CCDI Data Ecosystem

    The CCDI Data Ecosystem will connect many different types of childhood cancer data and provide tools to use these data. Doing this will make it easier for researchers to find and access data that could help them make faster progress in childhood cancer.

  • Events and Webinars

    NCI hosts CCDI events periodically throughout the year.