North American Association of Central Registries INC. (NAACR): Virtual Pooled Registry Project. September 19, 2017 through September 18, 2018

北美中央注册协会 INC. (NAACR)：虚拟汇集注册管理机构项目。

• 批准号: 9574969
• 负责人: Betsy Kohler
• 金额: $ 23.97万
• 依托单位: NORTH AMERICAN ASSN/CENTRAL CANCER REG
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-19 至 2018-09-18
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9574969
• 关键词: American; Cancer Patient; Cessation of life; Clinical Trials; Cohort Studies; Data Set; Databases; Marketing; Methods; Patients; Process; Registries; Research; Research Personnel; Resources; Standardization; Time; United States; Work; follow-up; indexing; interest; neoplasm registry; virtual

The Virtual Pooled Registry (VPR) Project will facilitate the linkage of confidential central cancer registry databases with existing sets of patients included in cohort studies, post-marketing surveillance as well as clinical trials for the purpose of providing follow-up information on these patients who may exist within a central cancer registry’s database. The current method for these linkages requires the researcher to work directly with each registry involved in the follow-up process including preparing and completing IRB documents, working with the registry to submit a standard dataset. This often requires significant time and resources and frequently there are no matches. For a large cohort study this may involve direct contact with a large percent of the State and regional central cancer registries in the United States. The purpose of the VPR project is to create a capacity similar to the National Death Index without the creation of an aggregated national level cancer patient database. The VPR will consist of “one stop shop” process through which an interested researcher could submit one research application and one research file which will undergo one standardized linkage simultaneously at multiple registries.

虚拟合并登记（VPR）项目将促进机密的中央癌症登记数据库与队列研究、上市后监测以及临床试验中纳入的现有患者集的联系，目的是提供中央癌症登记数据库中可能存在的这些患者的随访信息。这些联系的当前方法要求研究者直接与参与随访过程的每个登记中心合作，包括准备和完成IRB文件，与登记中心合作提交标准数据集。这往往需要大量的时间和资源，而且经常没有匹配。对于大型队列研究，这可能涉及与美国大部分州和地区中心癌症登记处的直接联系。 VPR项目的目的是建立一个类似于国家死亡指数的能力，而不需要建立一个国家一级的综合癌症患者数据库。自愿登记将包括“一站式”程序，感兴趣的研究人员可以通过该程序提交一份研究申请和一份研究文件，这些申请和文件将在多个登记中心同时进行一次标准化链接。