Administrative Core

行政核心

• 批准号: 10491839
• 负责人: Elizabeth B. Claus
• 金额: $ 31.87万
• 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/10491839
• 关键词: Address; Administrator; Advisory Committees; Advocate; Authorization documentation; Behavioral Sciences; Bioethics; Bioethics Consultants; Bioinformatics; Brain Neoplasms; Caregivers; Caring; Client satisfaction; Clinical Management; Clinical Trials; Colorado; Communication; Communities; Data; Diagnosis; Disease; Doctor of Philosophy; Education; Epidemiology; Evolution; Excision; Facebook; Gays; Genetic; Genomic medicine; Genomics; Glioma; Goals; Grant; Health Personnel; Hospitals; Institutional Review Boards; International; Internet; Knowledge; Lead; Leadership; Location; Maintenance; Malignant neoplasm of brain; Medical Records; Medical center; Melissa; Molecular Evolution; Movement; National Cancer Institute; Occupational activity of managing finances; Office of Administrative Management; Operative Surgical Procedures; Outcome; Patients; Personal Health Records; Persons; Postdoctoral Fellow; Process; Protocols documentation; Recurrence; Registries; Research; Research Assistant; Research Personnel; Resources; Secure; Site; Talents; Telephone; Time; Underserved Population; Universities; Woman; World Health Organization; base; cloud based; genetic counselor; implementation science; improved; innovation; interest; meetings; member; neurosurgery; organizational structure; patient engagement; repository; social media; software development; success; web site; young adult

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.

项目概要 低级别（世界卫生组织 (WHO) II/III 级）神经胶质瘤 (LGG) 是一种脑部恶性肿瘤，是一种 青壮年普遍致命的疾病。 LGG 的最佳临床治疗仍不清楚。一个 需要对从原发性 LGG 到复发的进化进行全面的基因组表征 开始解决 LGG 的知识差距；优化 LGG 患者在这项工作中的参与 对于这一过程的成功至关重要。使用我们的国际低级别胶质瘤登记处作为起点 点，我们将构建一个由 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现有开发的资源 耶鲁大学包括 HUGO PHR，这是一个基于云的安全个人健康记录平台，可实现安全和 基于许可的数据在患者和研究人员之间以及 ARCHETYP 之间双向移动 耶鲁大学开发的软件可以帮助患者定位临床试验。我们假设 LGG 患者对基因组表征的参与和满意度（以及整体参与） 研究将通过以下方式得到改进：1) 获取并与研究人员共享医疗记录数据的能力，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、结果以及患者具体结果，3) 改进信息传递和教育 关于患者材料的基因组特征的研究和患者目标。我们 还建议在此应用中获得的知识将提供显着的改进 LGG 患者的护理。