Childhood Cancer Data Initiative

The NCI’s Childhood Cancer Data Initiative (CCDI), which the Childhood Cancer Data Catalog is part of, is an initiative seeking to build a community centered around childhood cancer care and research. Through enhanced data sharing, the initiative works to improve understanding of cancer biology, preventive measures, treatment, quality of life, and survivorship, as well as ensure that the community can learn from every child with cancer.

The Childhood Cancer Data Catalog is part of the CCDI Data Ecosystem. Learn more about other CCDI data and resources on the CCDI Hub, and sign upfor email updates about CCDI.

CCDI Data Catalog

The Childhood Cancer Data Catalog (CCDC) is an inventory of pediatric oncology data resources, including childhood cancer repositories, registries, programs, knowledgebases, analytic tools and catalogs that either manage or refer to data. The data catalog is intended to help researchers, clinicians, and citizen scientists learn about existing pediatric data resources to develop new biomedical hypotheses, analyze the data for clinical or therapeutic efficacy, and foster connections within the community to existing pediatric oncology research sites.

Each CCDC participating resource includes information on one or more datasets for review. Summaries of these datasets include an overview by disease type, information on number of participants and samples, availability of molecular and imaging data, and characteristics of the population included and samples gathered (e.g., age, phenotype). The information found for each dataset is unique, and datasets, even within a single participating resource, may contain varying amounts of available data. After reviewing the dataset summaries, resource links and contact details can be used to connect with resource owners to learn more about how to gain access to the data. The data catalog does not provide access to a resource’s data.

Please note, the data on the CCDC site is only updated periodically and data on the site may not be as current as would be found on a resource's own data sharing site. For the most up to date information about a dataset, it is recommended to work directly with a resource owner. The resources owners, not the CCDC, would be in a place to provide in-depth information about a dataset. More information about the point of contact for each resource can be found on the Participating Resources  page.