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Expanding Genetic Risk Assessment to Underserved Populations: A Cancer Registry-Based Approach

将遗传风险评估扩展到服务不足的人群：基于癌症登记的方法

基本信息

批准号：
10831677
负责人：
Deborah Le Cragun
金额：
$ 12.25万
依托单位：
VANDERBILT UNIVERSITY MEDICAL CENTER
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-09-16 至 2025-08-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10831677
关键词：
Black Populations Black race Cancer Patient Cancer Survivor Caring Clinical Colorectal Cancer Coupled Development Education Eligibility Determination Endometrial Carcinoma Genetic Genetic Counseling Genomics Goals Guidelines Hereditary Malignant Neoplasm Improve Access Individual Infrastructure Inherited Knowledge Lead Malignant Neoplasms Malignant neoplasm of prostate Methodology Modeling Online Systems Parents Patient Recruitments Patients Pattern Policies Population Heterogeneity Practice Guidelines Public Health Research Rural Rural Population Services Sustainable Development System Tennessee Testing Underserved Population cancer diagnosis cancer prevention cancer therapy clinical care empowerment evidence base genetic counselor genetic risk assessment genetic testing high risk high risk population improved malignant breast neoplasm neoplasm registry novel recruit scale up system-level barriers testing services tool uptake

项目摘要

Abstract Integrating genetic counseling and testing services for hereditary cancer into clinical care is critical to provide evidence-based cancer prevention and treatment to high-risk populations. Yet, only a small proportion of patients who meet guidelines receive genetic counseling and/or testing, with even lower rates among Black and, rural populations. System-level barriers to access genetic testing, coupled with a workforce shortage of genetic counselors, contribute to the low uptake of genetic counseling and testing services. Through our proposed research, we will test a strategy to streamline genetic counseling and testing services for Black and rural cancer survivors, to improve access to genetic counseling and testing. The overarching goals of the supplement are to evaluate and examine the dissemination of an existing web-based genetic education tool in a population of Black and/or rural cancer patients recruited through the Tennessee state cancer registry to our parent study, who are eligible for but have not yet had genetic testing. We hypothesize that: 1) streamlining genetic counseling through web-based pre-test education will result in significant knowledge gains, and the majority of individuals will feel informed and empowered to make choices about genetic testing; and 2) we will be able to identify different patterns of facilitators and barriers that lead (or do not lead) to accessing genetic counseling and/or testing through use of a novel methodology (i.e., coincidence analysis). We will recruit at least 50 patients with breast, colorectal, endometrial, or prostate cancer who meet current practice guidelines for genetic testing for inherited cancer based on their personal cancer diagnosis. The overarching goals of our effort are to guide the development of sustainable system-level solutions to improve the delivery of genetic counseling services to enhance appropriate testing among cancer patients who meet guidelines yet have not pursued testing, leveraging a public health infrastructure (i.e., the state cancer registry). This transdisciplinary effort to reach diverse cancer patients will inform policy and the development of scalable models for delivering evidence-based genomic care across diverse populations and clinical settings.

摘要将遗传性癌症的遗传咨询和检测服务整合到临床护理中是提供向高危人群提供循证癌症防治。然而，只有一小部分人符合指南的患者接受遗传咨询和/或测试，黑人患者的比例更低还有农村人口。获得基因检测的系统层面的障碍，加上劳动力短缺遗传咨询师是遗传咨询和检测服务接受度低的原因之一。通过我们的在拟议的研究中，我们将测试一项简化黑人和青少年遗传咨询和检测服务的战略农村癌症幸存者，以改善获得遗传咨询和检测的机会。的首要目标是补充内容是评估和审查现有的基于网络的遗传教育工具在通过田纳西州癌症登记招募的黑人和/或农村癌症患者群体到我们的父母研究，有资格参加但尚未进行基因检测的人。我们假设：1)精简通过基于网络的测试前教育进行遗传咨询将导致显著的知识增长，并且大多数个人将感到知情并有权就基因检测做出选择；以及2)我们将能够识别导致(或不导致)获取基因的不同模式的促进者和障碍通过使用一种新的方法(即符合分析)进行咨询和/或测试。我们将在以下地点招聘符合当前临床指南的乳腺癌、结直肠癌、子宫内膜癌或前列腺癌患者至少50人根据他们的个人癌症诊断进行遗传性癌症的基因测试。我们的首要目标是努力指导制定可持续的系统级解决方案，以改善遗传资源的交付为符合指南但尚未达到指南的癌症患者提供咨询服务，以加强适当的检测开展检测，利用公共卫生基础设施(即州癌症登记处)。这是跨学科的努力接触不同的癌症患者将为政策和可扩展模式的开发提供信息跨不同人群和临床环境的循证基因组护理。