ENABLING NCI CLINICAL & RESEARCH DATA SHARING

国家癌症研究所（NCI）是联邦政府支持癌症研究的主要机构。该研究所在自己的设施中进行研究，指导根据合同执行的研究，并为美国和国外的非联邦机构的研究和培训提供赠款支持。NCI的首要目标之一是加强和实现NCI计划的数据共享。CBIIT试图通过多种方式实现这一目标，包括创建一个共享数据的基础平台（癌症研究数据共享- CRDC），并使用儿童癌症社区的协作努力作为模型，为社区范围的研究创建新模型。 儿童癌症很罕见，但却是婴儿期后死亡的主要原因。它们约占所有新诊断癌症的1%，大多数儿童癌症的原因尚不清楚。根据NCI监测、流行病学和最终结果（SEER）计划，青少年和年轻成人（NCI定义为15至39岁）癌症占所有癌症的5%。2019年12月，国会批准了儿童癌症数据倡议（CCDI）的资金。CCDI旨在通过加速数据收集，分析和共享来改善儿童癌症患者的治疗和结果。目前，儿科癌症的数据往往是碎片化的，存储在许多独立的数据库中，研究人员和临床医生很难访问。有必要构建儿科数据生态系统，以最大限度地获取、使用和互操作儿童癌症数据，提高我们预防、诊断和治疗儿童癌症患者的能力。

The National Cancer Institute (NCI) is the Federal government’s principal agency supporting cancer research. The Institute conducts research in its own facilities, directs research executed under contracts, and provides grant support for research and training in non-Federal institutions in the United States and abroad. One of the overarching goals of the NCI is to enhance and enable data sharing for NCI programs. CBIIT seeks to achieve this in many ways including creating a foundational platform for sharing data (Cancer Research Data Commons - CRDC) and creating new models for community-wide research, using the collaborative efforts of childhood cancer community as a model. Childhood cancers are rare but are the leading cause of death past infancy. They make up approximately 1% of all newly diagnosed cancers and causes of most childhood cancers are not known. Adolescent and young adult (defined by NCI as between ages 15 and 39) cancers constitute 5% of all cancers, according to the NCI Surveillance, Epidemiology, and End Results (SEER) program. In December 2019, Congress approved funding for the Childhood Cancer Data Initiative (CCDI). CCDI is aimed at improving treatment and outcomes for childhood cancer patients by accelerating data collection, analysis, and sharing. Currently, data for pediatric cancer are often fragmented and stored in many separate databases, and it can be difficult for researchers and clinicians to get access. It is necessary to build a pediatric data ecosystem to maximize access, use, and interoperability of childhood cancer data and improve our ability to prevent, diagnose, and treat childhood cancer patients.