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.

项目摘要 低年级（世界卫生组织（WHO）II/III级）神经胶质瘤（LGG）是大脑的恶性肿瘤，是一个 年轻人统一致命疾病。 LGG的最佳临床管理仍然未知。一个 需要全面的基因组表征从原发性LGG到复发的进化 开始解决LGG知识差距；优化LGG患者在这项工作中的参与度 对于这个过程的成功至关重要。使用我们的国际低级神经胶质瘤注册中心 点，我们将建立一个由700名LGG患者组成的社区，他们在 诊断和复发时，想参加研究。我们将使用两个基于医院的 以及基于网络和社交媒体的患者参与工作和适应已有的先前资源 在耶鲁大学，包括雨果PHR，这是一个安全的基于云的个人健康记录平台，可允许安全和 基于许可的数据在患者与研究人员与原型之间双向转向，A 耶鲁大学开发的软件可帮助患者参加临床试验的位置。我们假设该LGG 患者的参与度和满意度（因此总体参与）基因组表征 研究将通过1）与研究人员获取和共享病历数据的能力，2） 研究与研究重点的研究与患者之间的双向交流的可用性， 进步，结果以及患者具体的结果，3）改善消息传递和教育 关于患者材料的基因组表征的研究和患者目标。我们 还建议在本申请中获得的知识将在 LGG患者的护理。