Participant Engagement Unit

摘要：参与者参与单位（PEU） H/L倾向于在更年轻的年龄和更高的阶段被诊断，我们以前曾报道过墨西哥人 与其他H/L相比，加州的H/L具有最大比例的年轻（<50岁）诊断 分组。此外，墨西哥H/L显示直肠癌病例的患病率高于其他H/L， NHW。我们使用加州癌症登记数据（未发表结果）的最新分析，包括数据 1995-2017年诊断的52，557例H/L，显示约43%的US H/L在62岁之前被诊断出来 （NHW和H/L诊断的中位年龄）。此外，它们显示更大比例的远处肿瘤 诊断相比，NHW，转移性CRC的比例更大。总的来说，尽管各种 在H/L之间观察到的差异导致了他们的癌症负担，很少有研究关注 对这一少数群体的影响，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US H/L肿瘤状况的急需数据， 遗传祖先。因此，为了解决对CRC肿瘤景观缺乏了解的问题， H/L，并增加H/L在遗传研究中的参与和参与，我们建议制定有效的， 针对H/L的文化定制参与者参与方法，通过以下具体目标，1） 使用文化上适当的直接癌症参与者解决H/L CRC参与的知识差距 参与平台，用于招募、同意和传达基于癌症基因组的基因组风险 测序; 2）部署当前生物标本采集和质量评估的最佳实践， H/L参与者的相关临床和流行病学数据; 3）开发和评估有效性 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 接收基因组分析的结果，并返回其临床和流行病学数据;以及4） 通过评估基准和与参与方合作，不断提高参与方的参与度 优化部门确定优化知情同意、结果沟通和随访的策略， 考虑到患者和供应商的观点。这些目标的结果将被整合到 一个参与优化框架，用于创建一个强大且经过验证的模型，用于参与H/L癌症患者 癌症基因组研究。

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 Our most current analyses using the California Cancer Registry data (unpublished results), including data for 52,557 H/L diagnosed between 1995-2017, show that ~43% of US H/L are diagnosed before 62 years old (median age of diagnosis across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.