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

在美国，2019年估计将有11，060例新的癌症病例在出生至14岁的儿童中被诊断出来，预计约有1，190名儿童将死于这种疾病。尽管从1970年到2016年，这个年龄组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，并确定成功治疗癌症儿童的最佳方法。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，可互操作的和可重用的，那么这些数据的价值将被放大。目前，有大量的儿科癌症数据集，但许多很难定位，更难搜索-这种情况浪费了科学进步的可能性，通过重新使用这个语料库。该数据由各种有用的数据类型组成，包括但不限于组学、治疗和结局、人口统计学和临床数据。NCI资助了许多数据库，但不是所有数据库。研究可以通过使这些数据集更容易找到和重用来加速。这对其他利益攸关方也将有相当大的好处。为了改善目前的情况，并奋进解决这种孤立的数据情况，NCI需要健康FFRDC运营商的支持，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。在此工作结束时，Health FFRDC操作员应将所有材料和输出转换回NCI。预期的最终结果是，NCI能够自信地进行儿科肿瘤学研究数据目录的开发和可持续部署，这些数据目录具有科学相关的查询能力，由他们自己或在供应商的支持下进行。 联邦资助的健康研究与开发中心（FFRDC）运营商应提供计划、开发和转换原型所需的一系列支持服务 儿科肿瘤学数据目录功能，将更好地支持儿科肿瘤学研究社区和其他相关利益相关者的需求。

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.