Feasibility and Assessment of a Cascade Traceback Screening program - FACTS

项目摘要 卵巢癌是最致命的妇科癌症，也是癌症死亡的第五大原因 在美国妇女。尽管指南建议对所有卵巢癌患者进行基因检测， 只有不到四分之一的癌症患者接受了检测。该项目将侧重于可行性和选择， 通过文化上的方法， 适当的语言，以及与识别先证者和家庭成员有关的法律的问题， 利用现有资源成功地促进了医疗保健系统中的基因检测。 我们的长期目标是创建一个有效的追溯计划，是实用和可持续的 在现实世界中。本项目的主要目标是确定可接受性， 多人群回溯级联筛查程序的可行性和有效性 和医疗保健系统，将指导更广泛的实施。我们的研究问题是 组织背景和人群追溯程序的先证者识别和 可以对家庭成员进行级联筛查，成功的结果是什么 对于这样的计划，以及需要解决的背景，后勤和法律的障碍是什么？ 我们的具体目标是：1）根据所有50个州的隐私法，探索一个法律的解决方案 可能阻碍或促进家庭成员的基因检测; 2）阐明文化上适当的 语言和沟通策略，告知卵巢癌妇女及其家人 3）介绍基因检测的有效性和可行性; 在三个医疗保健系统中实施追溯级联筛查计划;以及4）探索 与追溯级联计划有关的实施成果， 更广泛地传播这样的计划。

PROJECT SUMMARY Ovarian cancer is the deadliest gynecologic cancer, and the fifth leading cause of cancer death in US women. Despite guidelines recommending genetic testing for all women with ovarian cancer, fewer than one-quarter are tested. This project will focus on the feasibility and options for implementation of a Traceback cascade screening program through methods, culturally- appropriate language, and legal issues related to identifying probands and family members and successfully facilitating genetic testing in healthcare systems with currently available resources. Our Long-term goal is to create an effective Traceback program that is practical and sustainable in the real-world setting. The main objective of this project is to determine the acceptability, feasibility, and effectiveness of a Traceback cascade screening program in multiple populations and healthcare systems that will guide broader implementation. Our research question is in what organizational contexts and populations a Traceback program for proband identification and cascade screening of family members can be implemented, what would successful outcomes be for such programs, and what are the contextual, logistical, and legal barriers to be addressed? Our specific aims are to: 1) to explore a legal solution based on the privacy laws of all 50 states that may hinder or facilitate genetic testing of family members; 2) illuminate culturally appropriate language and communication strategies to inform women with ovarian cancer and their family members about the availability of genetic testing; 3) describe the effectiveness and feasibility of a Traceback cascade screening program in three healthcare systems; and 4) to explore the implementation outcomes related to a Traceback cascade program to provide guidance for broader dissemination of such a program.