Participant Engagement Unit

参与者参与单元

• 批准号: 10294886
• 负责人: HEINZ JOSEF LENZ
• 金额: $ 84.26万
• 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 2026-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10294886
• 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; Distant; Education; Ensure; Ethnic group; Family; Formalin; Genetic; Genetic Counseling; Genetic Research; Genomics; Health Services Accessibility; High Prevalence; Hispanics; Immigration; Incidence; Individual; Informed Consent; Knowledge; Latino; Malignant Neoplasms; Mexican; Minority Groups; Modeling; Molecular; Molecular Profiling; Mutation; Not Hispanic or Latino; Oncogenes; Paraffin Embedding; Participant; Patients; Pattern; Play; Population; Population Heterogeneity; Process; Provider; Quality of Care; 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; base; 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; precision medicine; preference; racial and ethnic; recruit; research study; sociodemographics; therapeutic target; transcriptome sequencing; tumor; 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 Our most current analyses using the California Cancer Registry data (unpublished results), including data for 52,557 H/L diagnosed between 1995-2017, show that ~43% of US H/L are diagnosed before 62 years old (median age of diagnosis across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：参与者参与度单元(PEU) H/L倾向于诊断年龄更小，分期更高，我们之前曾报道过墨西哥人 与其他H/L相比，加利福尼亚州的H/L的年轻人(&lt；50岁)确诊的比例最高 子组。此外，墨西哥H/L的直肠癌患病率高于其他H/L和 啊哈。我们最新的分析使用加州癌症登记处的数据(未公布的结果)，包括数据 1995年至2017年诊断的52,557名H/L，显示~43%的美国H/L是在62岁之前确诊的 (NHW和H/L的诊断年龄中位数)。此外，它们显示了更大比例的远处肿瘤。 诊断与NHW相比，转移性结直肠癌比例更高。总体而言，尽管有各种各样的 在H/L中观察到的差异导致了他们的癌症负担，但很少有研究集中在 对这一少数群体的歧视，加剧了这一群体的差距。因此，迫切需要 增加资源，以提供关于美国H/L肿瘤格局的急需数据 说明遗传血统。因此，为了解决对结直肠癌肿瘤图景缺乏了解的问题， H/L，并增加H/L对基因研究的投入和参与，我们建议开发有效的和 针对H/L的文化定制的参与者参与方法，通过以下具体目标：1) 利用文化上合适的直接癌症参与者解决H/L参与结直肠癌的知识差距 基于癌症基因组的招募、同意和传播基因组风险的互动平台 测序；2)采用目前收集和质量评估生物检疫剂的最佳做法 H/L参与者的相关临床和流行病学资料；3)制定和评估效果 在临床环境中使用文化敏感的沟通策略，考虑参与者的偏好 接收基因组分析结果，并返回其临床和流行病学数据；以及4) 通过评估基准和参与工作，持续提高参与者参与度 优化股，以确定优化知情同意、成果通报和后续行动的战略， 考虑到患者和提供者的角度。这些目标的成果将被整合到 用于创建稳健且有效的H/L癌症患者参与度优化模型的敬业度优化框架 癌症基因组研究。