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

项目总结 低级别(世界卫生组织(WHO)II/III级)脑胶质瘤(LGG)是一种脑部恶性肿瘤 年轻人中一致致命的疾病。LGG的最佳临床治疗方法尚不清楚。一个 需要对从原发LGG到复发的演变进行全面的基因组特征描述 开始解决LGG知识差距；优化LGG患者在这方面的参与度 对这一进程的成功至关重要。以我们的国际低级别脑胶质瘤登记为起点 点，我们将建立一个由700名接受手术切除的LGG患者组成的社区 并在确诊和复发时希望参与研究。我们将使用以医院为基础的 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 在耶鲁，包括Hugo PHR，这是一个安全的基于云的个人健康记录平台，允许安全和 基于许可的数据在患者和研究人员之间的双向移动以及ARCHETYP，a 耶鲁大学开发的帮助患者进行临床试验的软件。我们假设LGG 患者对基因组特征的参与度和满意度(以及总体参与度) 研究将得到改进，1)获得病历数据并与研究人员共享的能力，2) 研究对象和患者之间关于研究焦点的双向交流的可用性， 进展、结果以及患者的具体结果，3)改进了消息传递和教育 关于患者材料的基因组特征方面的研究和患者目标。我们 我还提出，在此应用程序中获得的知识将在以下方面提供显著改进 对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.