Participant Engagement Unit

项目概要：参与者参与股 传统的流行病学方法用于招募罕见疾病患者，如LGG， 将地理上广泛分布的人口纳入研究队列是一项昂贵、劳动密集和耗时的工作。因此 需要替代方法，包括1）与患者利益相关者的合作，2）与 患者组织和3）使用基于网络的收集方法和社交媒体平台。使用这些 我们的团队创建了国际低级别胶质瘤（LGG）登记处，其总体目标是 对LGG进行重点研究。在此患者参与单元中，并与我们的参与合作 优化组（EOU），我们将从LGG登记处获得的试点数据中学习，以改进有效方法， 让患者和其他利益相关者参与制定信息、材料和协议， 招募、入组和保留LGG登记研究，并使用这些方法1）入组700例LGG患者 将复发性疾病纳入国际LGG登记处，2）收集流行病学，临床和结局 数据以及这700例LGG的体质（血液/唾液）和石蜡包埋肿瘤标本 患者和3）沟通整体研究和个人水平的结果（包括由 基因组表征单位）的700 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.