Feasibility and Assessment of a Cascade Traceback Screening program - FACTS
Feasibility and Assessment of a Cascade Traceback Screening program - FACTS
批准号:
10403939
负责人:
Nora B Henrikson
金额:
$88.41万
依托单位:
依托单位国家:
美国
项目类别:
财政年份:
2020
资助国家:
美国
项目状态:
已结题
起止时间:
2020-06-01 至 2024-05-31
关键词:
AddressCancer EtiologyCancer PatientCenters for Disease Control and Prevention (U.S.)Cessation of lifeClinicalClinical ProtocolsCommunicationComplementComplexDiagnosisEducational workshopEffectivenessEthnic groupFamilyFamily memberFeasibility StudiesGeneticGenomicsGoalsGuidelinesHealth Insurance Portability and Accountability ActHealthcare SystemsHereditary Breast and Ovarian Cancer SyndromeHereditary Malignant NeoplasmIndividualLanguageLawsLegalLogisticsMalignant Female Reproductive System NeoplasmMalignant NeoplasmsMalignant neoplasm of ovaryMeasuresMethodsModelingNational Cancer InstituteNotificationOutcomePatientsPhasePopulationPrivacyProcessProviderPublic HealthRegistriesRelative RisksReportingResearchResourcesScanningServicesSiteSystemTestingUpdateWomanbasecancer diagnosiscommunity engagementgenetic testingimplementation outcomesimplementation scienceimplementation toolnon-geneticpopulation healthprobandprogramsprospectiveracial and ethnicscreeningscreening programuptake
中文摘要
项目总结
卵巢癌是最致命的妇科癌症,也是癌症死亡的第五大原因
在美国女性身上。尽管指南建议对所有卵巢癌女性进行基因测试
癌症,只有不到四分之一的人接受了测试。该项目将侧重于以下项目的可行性和备选方案
通过各种方法实施追溯级联筛查计划,在文化上-
适当的语言,以及与识别先驱和家庭成员有关的法律问题
在现有资源的情况下,成功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切实和可持续的有效的追溯计划
在真实世界的背景下。这个项目的主要目标是确定可接受性,
多人群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保健系统。我们的研究问题是
组织背景和人口-先证者身份识别的追溯计划和
可以对家庭成员进行级联筛查,成功的结果是什么
对于这样的项目,需要解决的背景、后勤和法律障碍是什么?
我们的具体目标是:1)探索基于所有50个州的隐私法的法律解决方案
这可能会阻碍或促进对家庭成员的基因测试;2)阐明文化上的适当
为卵巢癌患者及其家人提供信息的语言和沟通策略
3)描述基因检测的有效性和可行性
在三个医疗保健系统中的追溯级联筛查计划;以及4)探索
与回溯级联计划相关的实施成果,以提供指导
更广泛地传播这样的节目。
英文摘要
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.
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专著(0)
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会议论文
Health care system-led familial risk notification: design and ethical assessment
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批准号:9789372
-
项目类别:
-
资助金额:$52.95万
-
财政年份:2018
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负责人:Nora B Henrikson
-
依托单位:
Health care system-led familial risk notification: design and ethical assessment
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批准号:9974558
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项目类别:
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资助金额:$49.46万
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财政年份:2018
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负责人:Nora B Henrikson
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依托单位:
海外基金