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

在美国，2019年，从出生到14岁的儿童中，估计将有11060个新的癌症病例被诊断出来，预计约有1190名儿童死于这种疾病。尽管从1970年到2016年，这一年龄段的癌症死亡率下降了65%，但癌症仍然是儿童疾病死亡的主要原因。NCI支持广泛的研究，以更好地了解儿童癌症的原因、生物学和模式，并确定成功治疗儿童癌症的最佳方法。这项研究产生了大量的数据，如果这些信息是可找到的、可访问的、可互操作的和可重复使用的，其价值将被放大。目前，有大量的儿科癌症数据集，但其中许多很难找到，更难搜索--这种情况浪费了通过在该语料库中重复使用而实现科学进步的可能性。这些数据由各种有用的数据类型组成，包括但不限于-组学、治疗和结果、人口统计学和临床数据。NCI为许多数据仓库提供资金，但不是所有。通过使这些数据集更容易找到和重复使用，可以加速研究。这也将给其他利益攸关方带来相当大的好处。为了改善现状并努力解决这种孤立的数据情况，NCI需要Health FFRDC操作员的支持，以提供评估、设计和原型服务，支持开发数据资源目录的目标。在这项工作结束时，Health FFRDC操作员应将所有材料和输出转移回NCI。预期的最终结果是，NCI能够自信地自行开发和可持续地部署具有科学相关查询功能的儿科肿瘤学研究数据目录，或在供应商的支持下进行。 健康联邦资助的研究和开发中心(FFRDC)运营商应提供规划、开发和过渡原型所需的一系列支持服务 儿科肿瘤学数据目录能力，将更好地支持儿科肿瘤学研究界和其他相关利益攸关方的需求。

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.