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。西班牙裔/拉丁裔是最大的 在美国，癌症是H/L中死亡的主要原因。 因此，我们需要充分了解这一族群癌症分子病因的全部复杂性。 例如，尽管拉丁美洲人的CRC发病率低于白人或非洲人， 美国人，西班牙裔转移性疾病有较短的总生存期时，调整医疗保健设置， 人口统计学、疾病特征和治疗因素。H/L也倾向于在年轻时被诊断出来 和更高的阶段，我们以前曾报道，墨西哥H/L在加州有最大的 与其他H/L亚组相比，年轻（<50岁）诊断的比例。墨西哥H/L 显示直肠癌病例的患病率高于其他H/L和NHW。虽然社会经济 获得医疗服务可能会影响这些差异，我们需要全面了解疾病的生物学， 以一劳永逸地确定这些临床差异是否与分子水平的差异有关。 病因学癌症基因组图谱提供了一个深入的概述CRC的分子分类在594 例H/L病例中H/L不足1%。因此，我们必须采取更详细的措施， H/L中CRC的分子基因组景观评估。其中一个主要问题可能限制了我们的能力 在少数民族患者中实施这些大型基因组计划的关键是患者或参与者参与实践 可能未进行调查，以确定获得患者同意进入临床转化的最佳实践 生物医学研究。这种参与者参与的概念对患者和患者都至关重要。 和转化型癌症研究团体。优化和改进我们的方法， 在最初接触患者时，在整个翻译基因组研究过程中， 结果的回报可能会导致医学界和患者之间更紧密的关系，但 也可能导致患者和癌症护理社区的结果显着改善， 整体因此，我们建议建立南加州大学参与者参与优化中心， 癌症表征（COPECC），重点是优化拉丁美洲人参与CRC基因组学 表征研究。USC COPECC将作为NCI U2 C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专家， 基因组表征、参与者参与和参与的所有相关研究领域 优化.我们有一个既定的平台，允许患者同意进行癌症基因组学研究， 作为一个标准过程。南加州大学COPECC的总体目标是产生参与者参与的结果 优化和CRC基因组研究，将与更广泛的社区分享，以最好地分发 鼓励拉丁美洲人参与的做法，希望改善CRC在这一服务不足人口中的总体成果。

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.