Feasibility and Assessment of a Cascade Traceback Screening program - FACTS

级联追溯筛查计划的可行性和评估 - FACTS

• 批准号: 10403939
• 负责人: Nora B Henrikson
• 金额: $ 88.41万
• 依托单位: GEISINGER CLINIC
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-06-01 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10403939
• 关键词: Address; Cancer Etiology; Cancer Patient; Centers for Disease Control and Prevention (U.S.); Cessation of life; Clinical; Clinical Protocols; Communication; Complement; Complex; Diagnosis; Educational workshop; Effectiveness; Ethnic group; Family; Family member; Feasibility Studies; Genetic; Genomics; Goals; Guidelines; Health Insurance Portability and Accountability Act; Healthcare Systems; Hereditary Breast and Ovarian Cancer Syndrome; Hereditary Malignant Neoplasm; Individual; Language; Laws; Legal; Logistics; Malignant Female Reproductive System Neoplasm; Malignant Neoplasms; Malignant neoplasm of ovary; Measures; Methods; Modeling; National Cancer Institute; Notification; Outcome; Patients; Phase; Population; Privacy; Process; Provider; Public Health; Registries; Relative Risks; Reporting; Research; Resources; Scanning; Services; Site; System; Testing; Update; Woman; base; cancer diagnosis; community engagement; genetic testing; implementation outcomes; implementation science; implementation tool; non-genetic; population health; proband; programs; prospective; racial and ethnic; screening; screening program; uptake

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.

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个主要原因 在美国妇女。尽管指南建议对所有卵巢妇女进行基因检测 癌症，不到四分之一的癌症。该项目将着重于可行性和选择 通过文化上的方法实施追溯级联筛查计划 适当的语言以及与识别证据和家人有关的法律问题以及 成功地促进了拥有当前可用资源的医疗保健系统中的基因检测。 我们的长期目标是创建一个实用且可持续的有效的追溯计划 在现实环境中。该项目的主要目的是确定可接受性， 在多个人群中追溯级联筛查计划的可行性和有效性 以及将指导更广泛实施的医疗系统。我们的研究问题是什么 组织环境和人口一个追溯计划，用于证明标识和 可以实施家庭成员的级联筛查，成功的结果将是什么 对于此类计划，应解决的上下文，后勤和法律障碍是什么？ 我们的具体目的是：1）根据所有50个州的隐私法探索法律解决方案 这可能会阻碍或促进家庭成员的基因检测； 2）在文化上阐明 语言和沟通策略，以告知卵巢癌及其家人的妇女 成员关于基因检测的可用性； 3）描述的有效性和可行性 三个医疗保健系统中的追溯级联筛查计划； 4）探索 与追溯级联计划有关的实施结果，以提供指导 更广泛地传播这样的程序。