USC PE-GCS: Optimizing Engagement of Hispanic Colorectal Cancer Patients in Cancer Genomic Characterization Studies

摘要 结直肠癌(CRC)是美国癌症死亡的第二大原因。拉美裔/拉丁裔是最大的 在美国，癌症是导致H/L死亡的首要原因。 因此，我们需要充分了解这一民族癌症分子病因学的全部复杂性。 例如，尽管与白人或非洲人相比，拉丁裔的结直肠癌发病率较低 美国人，患有转移性疾病的拉美裔人，在考虑医疗保健环境因素后，总体生存时间较短， 人口学、疾病特征和治疗因素。L也倾向于在更年轻的时候被诊断出来 并以更高的阶段，我们之前曾报道过，墨西哥H/L在加利福尼亚州拥有最大 与其他H/L亚组相比，年轻(&lt；50岁)诊断的比例。此外，墨西哥H/L 与其他H/L和NHW相比，直肠癌患病率更高。尽管社会经济学 而获得护理的机会可能会影响这些差异，我们需要全面了解疾病的生物学 一劳永逸地确定这些临床差异是否与分子差异有关 病因学。癌症基因组图谱提供了对594年结直肠癌分子分类的深入概述 然而，只有不到1%的病例(n=5)是H/L，因此，我们必须采取更详细的措施 H/L结直肠癌分子基因组图谱的评估可能限制我们能力的主要问题之一 在少数族裔患者中执行这些大型基因组计划的关键是患者或参与者的参与实践 可能不会被调查以确定聚集和同意患者进入临床翻译的最佳实践 生物医学研究。参与者参与度的这一概念对两个患者都至关重要 以及转化型癌症研究社区。优化和改进我们的方法，以直接 在翻译基因组研究的整个过程中，在初次接触时，以及在 结果的返回可能会导致医学界和患者之间更紧密的关系，但 还可以显著改善患者和癌症护理社区的预后 完整的。因此，我们建议成立南加州大学参与者参与度优化中心 癌症特征(COPECC)，重点是优化拉丁裔在CRC基因组中的参与 表征研究研究。南加州大学COPECC将作为NCI U2C参与者的成员 参与和癌症基因组测序(PE-CGS)网络。我们的调查团队包括以下专家 基因组特征、参与者参与度和参与度的所有相关研究领域 优化。我们已经建立了一个平台，让患者同意进行癌症基因组学研究，这将 作为标准流程。南加州大学COPECC的总体目标是在参与者参与度方面产生成果 优化和CRC基因组研究，将与更广泛的社区共享以分发最佳 促进拉美裔人参与的做法，希望在这一服务不足的人口中改善儿童权利公约的总体成果。

ABSTRACT Colorectal Cancer (CRC) is the second leading cause of cancer death in the US. Hispanic/Latinos are the largest and fasting growing ethnic group in the US, and cancer is the leading cause of death among H/L in the US. Therefore, we need to fully understand the full complexity of the molecular etiology of cancer in this ethnic group. For instance, although incidence rates of CRC are lower among Latinos as compared to Whites or African Americans, Hispanics with metastatic disease have shorter overall survival when adjusted for health care setting, demographics, disease characteristics and treatment factors. H/L also 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. Although socio-economics and access to care might influence these differences, we need to take a complete look at the biology of disease in this ethnic group to determine once and for all if these clinical differences are related to differences in molecular etiology. The Cancer Genome Atlas has provided a deep overview of the molecular taxonomy of CRC in 594 cases, however, less than 1% of the cases (n=5) were H/L. Therefore, it is imperative for us to take more detailed assessment of the molecular genomic landscape of CRC in H/L. One of the major issues likely limiting our ability to perform these large genomic initiatives in minority patients is that Patient or Participant Engagement practices may not been investigated to identify best practices for accruing and consenting patients into clinical translational biomedical research studies. This concept of Participant Engagement is critically important for both the patients and the translational cancer research community. Optimizing and improving our approaches for directly engaging patients at initial contact, throughout the course of a translational genomic study, and during the time of return of results is likely to lead to stronger relationships between the medical community and patients, but could also lead to significant improvement in outcomes for patients and for the cancer care community as a whole. As such, we propose the creation of the USC Center for Optimization of Participant Engagement in Cancer Characterization (COPECC) with a focus on optimizing the engagement of Latinos in CRC Genomic Characterization research studies. USC COPECC would serve as a member of the NCI U2C Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Our investigative team includes experts in all relevant areas of research for genomic characterization, participant engagement, and engagement optimization. We have an established platform for consenting patients into cancer genomics studies that will serve as a standard process. The overall goal of USC COPECC is to generate results on participant engagement optimization and CRC genomic research that will be shared with the broader community to distribute best practices for engaging Latinos in hopes of improving overall outcomes for CRC in this underserved population.