OPTimIzing engageMent in discovery of molecular evolution of low grade glioma (OPTIMUM)

项目摘要 低级（世界卫生组织（WHO）II/III级）神经胶质瘤（LGG），一种脑恶性肿瘤，是一种神经胶质瘤。 年轻人的致命疾病。LGG的最佳临床管理仍不清楚。一 从原发性LGG到复发性LGG的演变需要全面的基因组表征 开始解决LGG知识差距;优化LGG患者在这方面的参与 是这个过程成功的关键。使用我们的国际低级别胶质瘤登记处作为起点 在这一点上，我们将建立一个由700名LGG患者组成的社区，这些患者在 诊断和复发时，并希望参与研究。我们将使用两个医院为基础， 以及基于网络和社交媒体的患者参与工作，并调整已开发的现有资源 包括HUGO PHR，这是一个安全的基于云的个人健康记录平台， 患者和研究人员之间基于许可的数据双向移动， 耶鲁大学开发的软件，帮助病人在临床试验的位置。我们假设LGG 基因组表征中的患者参与度和满意度（以及整体参与度） 研究将通过以下方式得到改进：1）获得并与研究人员共享病历数据的能力，2） 研究和患者之间关于研究重点的双向沟通的可用性， 进展、结果以及患者特定结果，3）改进的信息传递和教育 关于患者材料的基因组表征的研究和患者目标。我们 我还建议，在此应用程序中获得的知识将提供一个显着的改善， LGG患者的护理

PROJECT SUMMARY Lower grade (World Health Organization (WHO) grade II/III) glioma (LGG), a malignant tumor of the brain, is a uniformly fatal disease of young adults. The optimal clinical management for LGG remains unknown. A comprehensive genomic characterization of the evolution from primary LGG to recurrence is required to begin to address the LGG knowledge gap; optimizing the engagement of LGG patients in this effort is critical to the success of this process. Using our International Low Grade Glioma Registry as a starting point, we will construct a community of 700 LGG patients who have undergone surgical resection at time of diagnosis and at time of recurrence and want to participate in research. We will use both hospital-based as well as web- and social media-based patient engagement efforts and adapt pre-existing resources developed at Yale including HUGO PHR, a secure cloud-based personal health record platform that allows secure and permission-based movement of data bi-directionally between patients and researchers and ARCHETYP, a Yale-developed software that assists patients in the location of clinical trials. We hypothesize that LGG patient engagement and satisfaction (and thus overall participation) in genomic characterization studies will be improved by 1) the ability to obtain and share medical record data with researchers, 2) the availability of bi-directional communication between study and patients regarding study focus, progress, outcomes as well as patient specific results, 3) improved messaging and education regarding study and patient goals with respect to genomic characterization of patient materials. We also propose that the knowledge gained in this application will provide a significant improvement in the care of LGG patients.