COORDINATING CENTER FOR THE CANCER GENETICS NETWORK

癌症遗传学网络协调中心

• 批准号: 6376800
• 负责人: DIANNE M FINKELSTEIN
• 金额: $ 101.25万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 1998
• 资助国家: 美国
• 起止时间: 1998-07-15 至 2003-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6376800
• 关键词: cancer information system; cancer prevention; cancer registry /resource; clinical research; computer data analysis; cooperative study; data management; family genetics; genetic counseling; genetic susceptibility; human data; neoplasm /cancer diagnosis; neoplasm /cancer genetics; statistical service /center; statistics /biometry

DESCRIPTION: (Applicant's Description) We propose to be part of the Informatics and Information Technology Group which provides informatics support for the NCI's Cancer Genetics Network, a multicenter interdisciplinary cooperative that will provide the infrastructure for research investigations of the genetic basis of human cancer susceptibility, explore mechanisms for integrating this information into medical practice, and identify means to address the public health issues associated with human cancer genetics. The Informatics Network will consist of three aspects: 1. Information support for a Registry of individuals of who are interested in participating in investigations. 2. An Electronic Access to Genetic Services, educational materials, and research protocols and 3. A Coordinating Center for Network Research Protocols. Our proposal is to fulfill the third task, to provide the coordination and implementation of network research protocols. We will provide expert biostatistical support to help design studies. We will coordinate protocol development, forms development, randomization and the collection and storage of patient specimens. We assume the Informatics Support Group for the Registry will provide a distributed data acquisition system. Personnel at each site will be responsible for maintaining their data using the system, and we will be responsible for maintaining their data using the system, and we will have a database which is a replicate of those at the sites. We will review the incoming data for completeness and accuracy and generate reports that monitor accrual and data quality. In addition we will periodically visit each site to audit a random sample of the transmitted data and review how well the site is following study procedures. We will generate interim statistical reports and generate a final repot when studies are completed. We will develop new statistical and data management methods, where necessary, to meet the goals of the network. In addition we will organize network steering committee meetings and establish a communications system for the network based on electronic mail, the World Wide Web, telephone conference calls, and periodic mailings. We will coordinate our activities with the other members of the Informatics Technology group.

描述：（申请人的描述） 我们建议成为信息学和信息技术小组的一部分 为 NCI 的癌症遗传学网络（一个 多中心跨学科合作社将提供 人类遗传基础研究调查的基础设施 癌症易感性，探索整合这些信息的机制 融入医疗实践，并确定解决公共卫生问题的方法 与人类癌症遗传学相关的问题。 信息学网络将 包括三个方面： 1. 为感兴趣的个人登记提供信息支持 参与调查。 2. 以电子方式获取遗传服务、教育材料和 研究方案和 3. 网络研究协议协调中心。 我们的建议是完成第三项任务，提供协调和 网络研究协议的实施。 我们将提供专家生物统计支持来帮助设计研究。 我们 将协调方案开发、表格开发、随机化和 患者标本的收集和储存。 我们假设信息学 注册支持小组将提供分布式数据采集 系统。 每个站点的人员将负责维护其 使用系统的数据，我们将负责维护他们的数据 使用该系统，我们将拥有一个数据库，它是这些数据库的复制品 在网站上。 我们将审查传入数据的完整性并 准确性并生成监控应计费用和数据质量的报告。 在 此外，我们将定期访问每个站点以审核随机样本 传输的数据并审查该站点跟踪研究的情况 程序。 我们将生成中期统计报告并生成 研究完成后的最终报告。 我们将开发新的统计和 必要时的数据管理方法，以满足网络的目标。 此外，我们将组织网络指导委员会会议和 建立基于电子邮件的网络通信系统， 万维网、电话会议和定期邮件。 我们 将与信息学的其他成员协调我们的活动 科技组。