Participant Engagement Unit

参与者参与单元

• 批准号: 10294464
• 负责人: Elizabeth B. Claus
• 金额: $ 299.93万
• 依托单位: YALE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-21 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10294464
• 关键词: Address; Adult; Affect; American; Authorization documentation; Blood; Brain Neoplasms; Clinical; Clinical Trials; Collaborations; Collection; Communication; Communication Tools; Communities; Computer software; Constitutional; Consumption; Data; Data Collection; Development; Diagnosis; Disease; Education; Eligibility Determination; Enrollment; Epidemiologic Methods; Epidemiology; Evolution; Excision; Funding; Generations; Genomics; Geography; Glioma; Goals; Individual; International; Knowledge; Learning; Medical Records; Methods; Molecular; Molecular Evolution; Movement; Netherlands; Online Systems; Operative Surgical Procedures; Outcome; Paraffin Embedding; Patient Recruitments; Patient advocacy; Patients; Personal Health Records; Persons; Population Heterogeneity; Portraits; Process; Protocols documentation; Rare Diseases; Recurrence; Recurrent disease; Registries; Research; Research Design; Research Personnel; Resources; Saliva; Secure; Societies; Specimen; Survival Rate; Test Result; Testing; Time; United States; Work; advocacy organizations; base; cloud based; cohort; cost; data sharing; digital; flexibility; improved; innovation; member; middle age; neural network; novel; participant enrollment; patient engagement; recruit; sample collection; satisfaction; scale up; social media; success; tool; tumor

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.

项目摘要：参与者参与单元 (PEU) 用于招募 LGG 等罕见病患者的传统流行病学方法 地理分布广泛，将其纳入研究队列是昂贵的、劳动密集型的和耗时的。因此，有 需要替代方法，包括 1) 与患者利益相关者合作，2) 与 患者组织；3) 使用基于网络的收集方法和社交媒体平台。使用这些 我们小组创建了国际低级别胶质瘤 (LGG) 登记处，其总体目标是 允许对 LGG 进行重点研究。在这个患者参与单元并与我们的参与合作 优化单元（EOU），我们将从 LGG 注册处提取的试点数据中学习，以完善有效的手段 让患者和其他利益相关者参与信息、材料和协议的制定 在 LGG 登记处招募、登记和保留，并使用这些方式 1) 登记 700 名 LGG 患者 将复发性疾病纳入国际 LGG 登记处，2) 收集流行病学、临床和结果 这 700 个 LGG 的数据以及体质（血液/唾液）和石蜡包埋的肿瘤样本 患者和 3) 传达总体研究和个人水平结果（包括由研究组执行的结果） 基因组表征单元）对 700 名 LGG 患者进行了研究。