Childhood Cancer Data Initiative Data Ecosystem Platforms and Tools

CCDI Childhood Cancer Clinical Data Commons

The CCDI Childhood Cancer Clinical Data Commons (C3DC) is an open-access web application with childhood cancer demographics and phenotypic clinical data. These data have been harmonized to a standard set of common data elements. The C3DC allows users to search for participant-level data, create synthetic cohorts, and export data.

CCDI Childhood Cancer Data Catalog

The CCDI Childhood Cancer Data Catalog is an inventory of childhood cancer data repositories from across the childhood cancer research community. This catalog will make it easier for researchers, doctors, and citizen scientists to find data that will help them. Each resource page includes a summary description, data content types, and links to access the data. The inventory includes childhood cancer repositories, registries, data commons, websites, tools, and catalogs that manage and refer to data.

CCDI Data Federation Resource

The CCDI Data Federation Resource is an application programming interface (API) that enhances data findability. Through the API, users can query genomic, clinical, imaging, and biospecimen data stored across multiple sources as if the data were in a single, unified database. Organizations can also find data more effectively, while ensuring compliance with regulatory standards.

CCDI Molecular Targets Platform

The CCDI Molecular Targets Platform is a tool that provides information about molecular targets—molecules involved in the growth and spread of cancer cells—that specifically affect childhood cancers. The platform includes information sourced from the Food and Drug Administration’s Pediatric Molecular Target Lists and several other projects, with plans to add more sources.

CCDI National Childhood Cancer Registry

The CCDI National Childhood Cancer Registry (NCCR) is a rapidly growing data resource on childhood, adolescent, and young adult cancer public health statistics. NCCR’s primary goal is to collect data from children, adolescents, and young adults with cancer—regardless of where they receive care—to better understand the causes, outcomes, effective treatments, and late effects of childhood cancer.

NCCR data come from hospitals, research centers, health care administrations, and other sources and are accessible through NCCR*Explorer. This interactive web application allows users to visualize incidence, survival, and prevalence cancer statistics. Data are sorted by sex, race, ethnicity, age, and cancer type.

Another tool, the NCCR Data Platform, holds childhood cancer data from population-based cancer registries and other data partners. This web application provides descriptive statistics for NCCR data and makes them easy to search for, visualize, request, and analyze in a secure cloud system. Data from different sources are matched for the same deidentified person.

CCDI Participant Index

The CCDI Participant Index is an API that manages, maps, and shares research participant IDs representing the same de-identified individual across different projects. It currently includes IDs for thousands of individuals from several organizations, including the Children’s Oncology Group.