Strategic Support Services for Advancement of Pediatric Oncology Data Sharing and Re-use for the National Cancer Institute (NCI)

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In the United States in 2019, an estimated 11,060 new cases of cancer will be diagnosed among children from birth to 14 years, and about 1,190 children are expected to die from the disease. Although cancer death rates for this age group have declined by 65 percent from 1970 to 2016, cancer remains the leading cause of death from disease among children. NCI supports a broad range of research to better understand the causes, biology, and patterns of childhood cancers, and to identify the best ways to successfully treat children with cancer. This research generates significant amounts of data, the value of which would be magnified if this information was findable, accessible, interoperable, and reusable. At present, there is a large number of pediatric cancer data sets, but many are hard to locate, and harder to search for – a situation which squanders the possibilities for scientific advancement through re-use available within this corpus. This data is composed of a variety of useful data types, including but not limited to -omics, treatment and outcome, demographics, and clinical data. NCI funds many, but not all data repositories. Research could be accelerated by making these data sets easier to find and reuse. This would also be of considerable benefit to other stakeholders. To improve the current situation and endeavor to address this siloed data situation, NCI requires the support of the Health FFRDC Operator to provide evaluative, design, and prototyping services, supporting the goal of developing a catalogue of data resources. At the end of this effort, the Health FFRDC Operator shall transition all materials and outputs back to NCI. The expected end result is that NCI is positioned to proceed confidently with the development and sustainable deployment of a pediatric oncology research data catalogue with scientifically relevant query capabilities by themselves or with vendor support. The Health Federally Funded Research and Development Center (FFRDC) Operator shall provide a range of support services required to plan for, develop, and transition a prototype pediatric oncology data catalogue capability that would better support the needs of the pediatric oncology research community and other relevant stakeholders.