Find Childhood Cancer Data in New Catalog!

NCI’s Childhood Cancer Data Initiative (CCDI) has launched a new data catalog listing more than 70 childhood cancer data resources.

The CCDI Childhood Cancer Data Catalog provides summaries of NCI and external resources from around the world representing more than 275,000 samples through:

  • programs collecting data (such as NCI’s Therapeutically Applicable Research to Generate Effective Treatments [TARGET]).
  • repositories storing data (such as NCI’s Genomic Data Commons).
  • Data catalogs (such as the clinical trials summaries from the Children’s Oncology Group).
Screenshot of CCDI catalog page illustrating some of the information found on a data set description page. The page includes the following sections in this order: 1. Title: Acute Lymphoblastic Leukemia (ALL) Expansion Phase 3 Acute Leukemias of Ambiguous Lineage (ALAL); 2. Data Resource: TARGET; 3. Point of Contact: Office of Cancer Genomics,; 4. Button to the right indicating this is data from a project; 5. About this dataset: Leukemia is a cancer of blood cells and can arise within distinct lineages, either lymphoid or myeloid. On occasion, patients present with an acute leukemia for which a specific lineage cannot be clearly determined. These cases are classified as acute leukemias of ambiguous lineage (ALAL), and they account for less than 4% of all acute leukemias across age groups; 5. Core Data Elements: Number of Cases = 115. Case Sex = Female (44); Male (71). Case Age at Diagnosis  = 0 to 4 years(39); 5-9 years (34); 10 to 14 years (22); 15 t 19 years (20). Case Race = Not Reported (115). Case Ethnicity = Not Reported (115). Case Disease Diagnosis = Acute Lymphocytic Leukemia (115). Case Tumor Site = Hematopoietic and Reticuloendothelial systems (115); 6. Additional Data Elements: Data Repository = Grant ID = 261200800001E-12-0-40 U10CA180886 HHSN2621200800001E. Grant Name = Therapeutically Applicable Research to Generate Effective Treatments (TARGET) and COG NCTN Network Group Operations Center.
An example of the kind of summary information that can be found on the data set page.

The types and kinds of data vary between resources. So far, the catalog includes genomic, proteomic, medical imaging, and clinical trial data collections. Though researchers won’t be able to download raw data from the catalog itself, each listing provides a link to the resource, an overview of the data collection, available analysis tools to work with the data, and a point of contact for additional questions.

The need for a comprehensive catalog of childhood cancer data resources was recognized in the early planning of the CCDI. In a 2020 report from the Board of Scientific Advisors on the CCDI, members highlighted that, “unfortunately, there is no registry or catalog of existing childhood/[adolescent and young adult] AYA cancer data or data repositories, and there is little to no standardization among the existing databases.”

Through the catalog and other efforts (such as the CCDI Molecular Characterization Initiative and the National Childhood Cancer Registry), CCDI continues to make progress towards a childhood cancer data ecosystem and to making childhood cancer data more shareable across the community. “The catalog serves the needs of the childhood cancer communities by facilitating easier access to a more complete corpus of relevant scientific data,” explained Dr. Subashini Jagu, an NCI CBIIT staff member coordinating the development of the project. “By helping researchers to identify existing resources and find relevant data, we can more efficiently accelerate childhood cancer research.”

Share your data resources through the catalog!

As members of the cancer data science community, you play a pivotal role in helping keep the CCDI Data Catalog updated with the latest resources. Consider sharing your childhood data collection, program, project, repository, or tool with the community. If interested, download a resource summary form, and email it to the catalog mailbox.

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