Childhood Cancer Data Initiative

About the CCDI

NCI created the Childhood Cancer Data Initiative (CCDI) to help collect, standardize, and facilitate the re-use of pediatric cancer data.

While pediatric cancer is a leading cause of death in American children, adolescents, and young adults (AYAs), the data sets that can inform treatment decisions are often limited and fragmented. To address this, CCDI focuses on enhancing access to and usability of data. CCDI is working to establish partnerships with organizations collecting pediatric cancer data and develop strategies for characterizing molecular data to help fill the gaps in our understanding of childhood cancer.

Whether you are a cancer researcher, clinical oncologist, data scientist, or bioinformatician, you can use CCDI data and tools for its ecosystem to help us better understand, detect, diagnose and treat childhood cancer.

NCI’s Role

Combatting childhood cancer is an NCI priority. This includes a commitment, through data and research, to advocating and sharing its importance, goals, and potential outcomes for treating children and AYAs with cancer. With this goal in mind, NCI collaborated with several stakeholders and is soliciting feedback from advocates to build the robust CCDI data ecosystem.

NCI’s Center for Biomedical Informatics and Information Technology (CBIIT) is leading the development of the infrastructure, technology, and data sharing approaches for the ecosystem (some of these examples include the tools and platforms listed below). CBIIT staff also participate in and lend their expertise to several key working groups and committees.

However, CBIIT is not the only NCI organization involved. Many NCI divisions, offices, and centers are working together to make pediatric cancer data more accessible and ready for secondary use.

Connecting the Cancer Community

As part of the cancer data science community, there are many ways you can stay involved and help drive pediatric cancer research.

• Find and access pediatric cancer data:
  • CCDI Hub: Find CCDI-funded data sets, metadata, and tools for your cancer research.
  • Childhood Cancer Data Catalog: Explore an inventory of pediatric oncology data resources including data repositories, registries, knowledge bases, and catalogs.
  • Childhood Cancer Clinical Data Commons: Access harmonized demographic and clinical data, create custom cohorts, and download data for analysis.
  • CCDI Data Federation Resource API (Version 1): Connect to this application programming interface (API) to search data from several pediatric data resources.
  • CCDI Participant Index API: Use this API to access mapped participant research IDs across various pediatric cancer studies from 32 diverse domains.
  • CCDI Molecular Target Platform: Browse and identify associations between molecular targets, diseases, and drugs specific to childhood cancers.
  • Molecular Characterization Initiative for Childhood Cancers: Through collaboration with Children’s Oncology Group, access molecular characterization data to study the genetic and molecular underpinnings of pediatric cancers.
  • National Childhood Cancer Registry Explorer: Find incidence and survival statistics for AYAs with cancer, plus data from up to 25 NCCR registries representing 70% of the U.S. population.
  • NCCR Data Platform: Use this data to support in-depth analysis and advance scientific understanding of pediatric cancer and survivorship.
• Share your data with CCDI: Email a resource summary form to the CCDI Mailbox to list your childhood data collection, program, project, repository, or tool in the CCDI Childhood Cancer Data Catalog.
• Review supplementally funded projects: View a list of CCDI-funded projects aiming to drive discoveries and foster collaborative childhood cancer research.
• Find funding opportunities: Explore available grants to start your own research.
• Continue learning: Join the CCDI Webinar Series to engage with CCDI professionals and learn how to find and use CCDI web applications, platforms, and data.

Additional Information

For the latest information on CCDI:

• visit CCDI webpages to learn more about the initiative and NCI’s efforts.
• email CCDI with questions, suggestions, or more information about their resources.
• sign up for the CCDI newsletter for monthly CCDI updates.
• subscribe to weekly data science updates to stay abreast of the latest CCDI data sets and technical advancements.

For past news on CCDI’s data science and bioinformatics efforts, review our archive of CCDI news posts.