Participant Engagement Unit

项目摘要：参与者参与单位(PEU) 传统的流行病学方法用于招募患有LGG等罕见疾病的患者，这些患者 在地理上广泛传播，进入研究队列是昂贵的、劳动密集型的和耗时的。因此，在那里 是否需要替代方法，包括1)与患者利益相关者接触，2)与 患者组织以及3)基于网络的收集方法和社交媒体平台的使用。使用这些 工具我们小组创建了国际低级别胶质瘤(LGG)注册中心，其首要目标是 允许对LGG进行重点研究。在此患者参与部，并与我们的参与部合作 优化股(EOU)我们将学习从LGG注册处提取的试点数据，以完善有效的方法 让患者和其他利益相关者参与制定信息、材料和方案 在LGG注册表中招募、登记和保留，并使用这些方法1)登记700名LGG患者 2)收集流行病学、临床和转归 这700个LGG的数据以及构成(血液/唾液)和石蜡包埋的肿瘤标本 患者和3)传达整体研究和个人水平的结果(包括由 基因组特征单元)提供给700名LGG患者。

PROJECT SUMMARY: PARTICIPANT ENGAGEMENT UNIT (PEU) Traditional epidemiological methods used to recruit patients with rare diseases such as LGG, who are geographically widely spread, into research cohorts is costly, labor-intensive and time-consuming. Thus, there is a need for alternative methods that include 1) engagement with patient stakeholders, 2) partnership with patient organizations and 3) use of web-based collection methods and social media platforms. Using these tools our group created the International Low Grade Glioma (LGG) Registry, the overarching goal of which is to allow for focused study of LGG. In this Patient Engagement Unit and in collaboration with our Engagement Optimization Unit (EOU) we will learn from pilot data drawn from the LGG Registry to refine effective means to engage patients and other stakeholders in the development of messages, materials, and protocols for recruitment, enrollment, and retention in the LGG Registry and use these means to 1) enroll 700 LGG patients with recurrent disease into the International LGG Registry, 2) collect epidemiological, clinical, and outcome data as well as constitutional (blood/saliva) and paraffin-embedded tumor specimens for these 700 LGG patients and 3) communicate overall study and individual level results (including those performed by the Genomic Characterization Unit) to the 700 LGG patients.