Participant Engagement Unit

参与者参与单元

• 批准号: 10696241
• 负责人: HEINZ JOSEF LENZ
• 金额: $ 29.35万
• 依托单位: UNIVERSITY OF SOUTHERN CALIFORNIA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-22 至 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10696241
• 关键词: Accounting; Acculturation; Address; Advocate; Age; Age Years; Benchmarking; Biological; Blood specimen; California; Cancer Burden; Cancer Patient; Caribbean Hispanic; Caring; Cessation of life; Clinical; Clinical Data; Clinical Trials; Collection; Colorectal Cancer; Communication; Consent; Country; Data; Development; Diagnosis; Disparity; Distant; Education; Ethnic Population; Family; Formalin; Genetic; Genetic Counseling; Genetic Research; Genomics; Health Services Accessibility; High Prevalence; Hispanic; Hispanic Populations; Immigration; Incidence; Individual; Informed Consent; Knowledge; Latino; Malignant Neoplasms; Mexican; Minority Groups; Modeling; Molecular; Molecular Profiling; Mutation; Oncogenes; Paraffin Embedding; Participant; Patients; Pattern; Play; Population; Population Heterogeneity; Process; Provider; Quality of Care; Race; Recording of previous events; Rectal Cancer; Recurrence; Reporting; Research; Research Personnel; Resources; Risk; Role; Subgroup; Testing; The Cancer Genome Atlas; Therapeutic; Trust; Tumor Tissue; Underserved Population; Use Effectiveness; Whole Blood; Woman; advanced disease; cancer genomics; cancer type; clinically relevant; colon cancer patients; data registry; driver mutation; early onset colorectal cancer; effectiveness evaluation; epidemiologic data; ethnic minority population; exome; follow-up; genome sequencing; genome-wide; improved; improved outcome; interest; men; metastatic colorectal; mortality; neoplasm registry; novel; patient engagement; patient population; personalized approach; population stratification; precision medicine; preference; recruit; research study; sociodemographics; therapeutic target; transcriptome sequencing; tumor; tumor diagnosis; whole genome

ABSTRACT: PARTICIPANT ENGAGEMENT UNIT (PEU) H/L tend to be diagnosed at a younger age and with higher stage, and we have previously reported that Mexican H/L in California have the greatest proportion of young (<50 years of age) diagnoses compared to other H/L subgroups. Moreover, Mexican H/L showed higher prevalence of rectal cancer cases compared to other H/L and NHW. Our most current analyses using the California Cancer Registry data (unpublished results), including data for 52,557 H/L diagnosed between 1995-2017, show that ~43% of US H/L are diagnosed before 62 years old (median age of diagnosis across NHW and H/L). Moreover, they show a greater proportion of distant tumor diagnoses compared to NHW, and greater proportion of metastatic CRC. Overall, in spite of the various disparities observed among H/L that contribute to their cancer burden, there are scarce studies that have focused on this minority population, contributing to further disparities in this group. Therefore, there is an urgent need to increase resources that will contribute much needed data about the tumor landscape of US H/L taking into account genetic ancestry. Therefore, to address the lack of knowledge about the CRC tumor landscape among H/L, and increase engagement and participation of H/L in genetic research, we propose to develop effective and culturally tailored participant engagement approaches tailored to H/L, through the following specific aims, 1) to address the knowledge gap in H/L CRC participation using a culturally appropriate direct cancer participant engagement platform for recruiting, consenting, and communicating genomic risk based on cancer genomic sequencing; 2) to deploy current best practices for collection and quality assessment of biospecimens and relevant clinical and epidemiological data among H/L participants; 3) To develop and assess the effectiveness of using culturally sensitive strategies for communication in clinical settings, that consider participant preferences in receiving results from genomic analyses, and return of their clinical and epidemiological data; and 4) To continuously improve participant engagement by assessing benchmarks and working with the Engagement Optimization Unit to identify strategies to optimize informed consent, communication of results, and follow-up, taking into account the patients and providers perspectives. The results of these aims will be integrated across an engagement optimization framework to create a robust and validated model for engaging H/L cancer patients into cancer genomic research studies.

摘要：参与者参与部门（PEU） H/L倾向于在年轻时诊断出较高的阶段，我们以前曾报道过墨西哥人 与其他H/L相比 亚组。此外，与其他H/L相比，墨西哥H/L显示出直肠癌病例的患病率更高 NHW。我们使用加利福尼亚癌症注册表数据（未发表的结果）进行的最新分析，包括数据 对于1995 - 2017年间诊断的52,557 h/l，在62岁之前诊断出约43％的美国H/L （跨NHW和H/L的诊断年龄中位数）。此外，它们显示出更大比例的远处肿瘤 与NHW相比，诊断和转移性CRC的比例更大。总的来说，尽管有不同的 H/L之间观察到的差异会导致其癌症负担 在这个少数族裔人口中，这导致了这一群体的进一步差异。因此，迫切需要 增加资源，这些资源将贡献有关美国H/L肿瘤景观的急需数据 帐户遗传血统。因此，解决缺乏有关CRC肿瘤景观的知识 H/L，并增加H/L参与和参与遗传研究，我们建议发展有效和 通过以下特定目的，1） 使用适当的文化直接癌症参与者来解决H/L CRC参与中的知识差距 基于癌症基因组的招聘，同意和传达基因组风险的参与平台 测序； 2）部署当前的最佳实践，以收集和质量评估生物测量和质量评估 H/L参与者之间的相关临床和流行病学数据； 3）发展和评估有效性 在临床环境中使用对文化敏感的策略进行交流的，这些策略考虑参与者的偏好 在接受基因组分析的结果以及其临床和流行病学数据的回归时；和4）到 通过评估基准并与参与度合作，不断改善参与者的参与 优化单元以确定优化知情同意，结果交流和后续行动的策略， 考虑到患者和提供者的观点。这些目标的结果将整合 参与优化框架，以创建一个可与H/L癌症患者参与的强大而经过验证的模型 进入癌症基因组研究。