About the Childhood Cancer Data Initiative Data Ecosystem

Signposts with different data-related icons are to the left of a yellow circle with text describing the CCDI Hub. An arrow points from the yellow circle to a larger tri-colored circle divided into teardrop-shaped thirds, each describing part of the CCDI Data Ecosystem. — View and Print Infographic

The Childhood Cancer Data Initiative (CCDI) Data Ecosystem is a connected network of tools and resources that will bring together clinical, research, and registry data on children, adolescents, and young adults (AYAs) with cancer from separate data repositories (collections of stored data). The ecosystem will also provide tools to use the data in new ways.

Users will have easy access to the ecosystem through a centralized portal called the CCDI Hub. The CCDI Hub is an entry point for basic scientists, doctors, data scientists, advocates, patients, and families looking to use and connect with CCDI-related data.

How will the CCDI Data Ecosystem help advance childhood cancer research?

The CCDI Data Ecosystem will allow doctors and researchers to access and explore data from children and AYAs with childhood cancer treated at many different academic and medical institutions around the country. The ecosystem’s portal will unify and connect to these data. Connecting and compiling this information from many different sources will give doctors and researchers a more complete understanding of childhood cancers. This could lead to improvements in prevention, treatment, quality of life, and survivorship for children and AYAs with cancer.

How does CCDI connect new and existing data?

The CCDI Data Ecosystem will connect new and existing data that comes from different institutions and is stored on various platforms through a centralized portal. Data connected through this ecosystem will need to follow certain standards. Standardizing clinical and research data from multiple sources will make it easier and quicker for researchers to find the data they need to answer key scientific questions, which in turn can speed up childhood cancer research progress. The CCDI Data Ecosystem is still being developed and will eventually include several components.

In addition to currently available platforms and tools, the ecosystem will also include data from the CCDI Molecular Characterization Initiative and the CCDI Coordinated Pediatric, Adolescent, and Young Adult Rare Cancer Initiative.