COORDINATING CENTER FOR THE CANCER GENETICS NETWORK

描述：（申请人描述）

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.