MID ATLANTIC CANCER GENETICS NETWORK

中大西洋癌症遗传学网络

• 批准号: 6802934
• 负责人: CONSTANCE A GRIFFIN
• 金额: $ 67.71万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 1998
• 资助国家: 美国
• 起止时间: 1998-08-01 至 2004-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6802934
• 关键词: biomedical resource; cancer information system; clinical research; cooperative study; human subject; neoplasm /cancer education; neoplasm /cancer genetics; patient /disease registry; tissue resource /registry; biomedical resource; cancer information system; clinical research; cooperative study; human subject; neoplasm /cancer education; neoplasm /cancer genetics; patient /disease registry; tissue resource /registry

DESCRIPTION: (Applicant's Description) Our overall goal is to establish a regional cancer genetics network in the Mid-Atlantic region (encompassing Maryland, Delaware, and the District of Columbia) and additional participating institutions that, along with our existing and strong cancer-related resources and facilities, can contribute to the goals of the overall Cancer Genetics Network (CGN) in order to promote cancer genetics research, education, and clinical services, both locally and nationally. Johns Hopkins is uniquely positioned by its multidisciplinary leadership in cancer genetics research, clinical programs, and genetics and public policy/ethics studies to readily develop an integrated network. Our specific aims include: 1) To construct a Mid-Atlantic Cancer Genetics Network (MACGN), which through consortial arrangements, will function as an actively participating center of the national CGN. 1a) We will establish an organizational structure composed of a central Steering Committee, the participating regional institutions, and support personnel for the research, educational, and local informatics activities, all linked by secure Internet access. lb) We will develop and coordinate referrals of high risk patients and families (by regional institutions and existing research studies/registries) to established clinical programs in predictive cancer genetic testing to further expand cancer genetic services in the region and support the activities of the national CGN. 2) To facilitate cancer genetics research within the CGN. 2a) We will establish an appropriate local program structure to assist investigators interested in cancer genetics research. This program will be directed by the MACGN Steering Committee and will organize and track ongoing research activities both locally and within the CGN, exploit local collateral research strengths in cancer research, provide expertise to formulate new hypotheses, and coordinate mechanisms for the funding of promising studies. 2b) We will develop and maintain a local registry resource of selected high risk patients and families eligible for research protocols of the CGN. This MACGN resource will recruit patients into the national CGN registry, compile core clinical, family, and epidemiologic data, and collect and store biological specimens as needed for specific CGN studies. 3) To coordinate and promote cancer genetics educational opportunities in the Mid-Atlantic region. 3a) We will establish a local program to coordinate new and existing community and patient cancer genetics educational resources, including the development of Internet-based information. 3b) Through collaboration with other CGN participating centers, we will adapt nationally developed cancer genetics curricula and devise educational materials appropriate for health professionals in the Mid-Atlantic region and broader geographic areas covered by CGN centers. 3c) We will disseminate the locally- and CGN-developed cancer genetics curriculum and informational updates to the Mid-Atlantic region through academic courses (both traditional and distance learning modes), CME courses, a speakers bureau, and electronic newsletters. Thus, the Johns Hopkins team will provide the leadership to integrate its multifaceted strengths in basic research, clinical research, informatics expertise, genetic policy studies, and health, education to form a center that will both serve and draw from its regional clinic population, and function in the national Cancer Genetics Network.

描述：（申请人的描述）我们的总体目标是建立一个 大西洋中部地区的区域癌症遗传学网络（包括 马里兰州，特拉华州和哥伦比亚特区）和其他 参与我们现有和强大的机构 与癌症相关的资源和设施可以为 总体癌症遗传学网络（CGN），以促进癌症遗传学 研究，教育和临床服务在本地和全国范围内。 约翰·霍普金斯（Johns Hopkins 癌症遗传学研究，临床计划以及遗传学和公众 政策/道德研究，可以轻松开发综合网络。 我们的 具体目的包括：1）构建中大西洋癌遗传学 网络（MACGN）通过联盟安排将充当 积极参与国家CGN的中心。 1A）我们将建立一个 组织结构由中央指导委员会组成 参与区域机构，并支持研究人员 教育和本地信息学活动，全部由安全的互联网链接 使用权。 LB）我们将开发和协调高风险患者的转诊 和家庭（由区域机构和现有研究 研究/注册表）为预测性癌症建立的临床计划 基因检测以进一步扩大该地区的癌症遗传服务和 支持国家CGN的活动。 2）促进癌症 CGN内的遗传学研究。 2a）我们将建立适当的 当地计划结构以协助对癌症感兴趣的调查人员 遗传学研究。 该程序将由MACGN转向指导 委员会并将组织和跟踪正在进行的研究活动 在本地和CGN中，利用本地附带研究优势 癌症研究，提供专业知识来提出新的假设，以及 协调有前途研究的资金的机制。 2b）我们会的 开发和维护选定高风险的本地注册表资源 患者和家族有资格获得CGN研究方案。 这 MACGN资源将招募患者进入国家CGN注册中心，编译 核心临床，家庭和流行病学数据，并收集和存储 根据特定CGN研究的需要的生物标本。 3）协调 并促进大西洋中部的癌症遗传学教育机会 地区。 3a）我们将建立一个本地计划，以协调新的计划和 现有的社区和患者癌症遗传学教育资源， 包括开发基于Internet的信息。 3b）通过 与其他CGN参与中心的合作，我们将在全国范围内适应 开发了癌症遗传学课程并设计教育材料 适合大西洋中部地区的卫生专业人员 CGN中心覆盖的地理区域。 3C）我们将传播 本地和CGN开发的癌症遗传学课程和信息 通过学术课程更新到大西洋地区（均 传统和远程学习模式），CME课程，演讲局， 和电子通讯。 因此，约翰·霍普金斯团队将提供 领导将其多面优势整合到基础研究中， 临床研究，信息学专业知识，遗传政策研究和 健康，教育，形成一个既服务又可以从其中汲取的中心 区域诊所人口以及国家癌症遗传学的功能 网络。