Admin Core

管理核心

• 批准号: 10686325
• 负责人: Eva Morava-Kozicz
• 金额: $ 26.87万
• 依托单位: MAYO CLINIC ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-15 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10686325
• 关键词: Berry; Caring; Clinic; Clinical; Clinical Research; Collaborations; Common Data Element; Communication; Communities; Congenital disorders of glycosylation; Data Analyses; Data Collection; Diagnostic; Ensure; Environment; Family; General Population; Goals; Individual; Infrastructure; Internet; Lead; Leadership; Learning; Link; Metabolic; Mission; Monitor; Online Systems; Participant; Patient Recruitments; Patients; Pediatric Hospitals; Philadelphia; Physicians; Play; Productivity; Protocols documentation; Quality of life; Registries; Research; Research Design; Research Personnel; Resource Sharing; Resources; Role; Scientist; Shapes; Site; Statistical Data Interpretation; Time; Training; Training Programs; Training Support; biobank; career; clinical practice; data handling; effective therapy; experience; frontier; improved; information gathering; interest; medical specialties; meetings; patient advocacy group; patient engagement; patient population; programs; protocol development; research and development; success; symposium; synergism

ADMINISTRATIVE CORE-ABSTRACT/PROJECT SUMMARY The goal of the Administrative Core of the Frontiers in Congenital Disorders of Glycosylation Consortium is to facilitate a well-organized, well-executed program and provide responsible time and fiscal management to facilitate Congenital Disorders of Glycosylation (CDG) research. The Core will also play the lead role in maintaining continuous communication within the program, supporting relationships across projects and cores. It will serve as the link to RDCRC program oversight, contact among other clinical and diagnostic sites across the U.S., and collaboration and resource sharing within Mayo Clinic. The Administrative Core will provide leadership and collaboration between the Clinical Projects and Cores of the Consortium, establish the RDCRC infrastructure including the Administrative Directors (Drs. Eva Morava and Gerard T. Berry), project leads, core leads and co- investigators; provide administrative support to the Pilot and Feasibility and the Career Enhancement Core; establish the biostatistician at Mayo Clinic who will provide support for protocol development, construction of study designs, CDG Registries, statistical data analyses, collection of data from the participating sites; and establish and maintain CDG biobanks and the various omics activities. It will also ensure the Consortium's mission of reaching clinical and scientific goals in CDGs is achieved; assure incorporation and participation of Congenital Disorders of Glycosylation specialty clinics at Mayo Clinic, Seattle Children's Hospital and Children's Hospital of Philadelphia; facilitate investigator trips to relevant Consortium meetings, coordinate and support RDCRN-wide efforts to develop and monitor best practices for clinical and research data handling and use, including the use of Common Data Elements (CDEs); maintain a web environment that renders information on CDGs accessible in a comprehensive way for patients and their families, the general public, treating physicians and those in-training and interested researchers not in the field. Lastly, it will facilitate a strong platform for collaboration between CDG-Care and Consortium investigators to produce a highly productive synergy that increases patient engagement in clinical research; establish and coordinate monthly web-based or conference calls, 2X a year face-to-face meetings of clinical project and core lead investigators, CDG-Care and the SC to share experiences, learn from each other, and gather information about resources and scientific projects; and arrange yearly retreats for all participants of the consortium extended with the External Advisory Board Coordinate information and communication about Consortium research developments to patient advocacy groups, clinicians, investigators, the scientific community at large, and the public. The Administrative Core on the Frontiers in Congenital Disorders of Glycosylation Consortium's impact is such that centralization of administrative responsibilities will promote synergy and communication between the individual Projects and Cores to allow for integrated leadership, progress monitoring, data analysis and interpretation.

行政核心提取/项目摘要 糖基化联盟的先天性疾病中边境核心行政核心的目标是 促进组织良好，执行良好的计划，并提供负责任的时间和财政管理以促进 糖基化（CDG）研究的先天性疾病。核心还将在维持 计划中的连续沟通，支持项目和核心之间的关系。 它将用作指向RDCRC计划监督的链接，在整个临床和诊断站点之间联系 美国，以及梅奥诊所内的协作和资源共享。行政核心将提供领导 以及财团的临床项目和核心之间的合作，建立RDCRC基础设施 包括行政总监（包括Eva Morava博士和Gerard T. Berry），项目负责人，核心领导和共同 调查人员；为飞行员和可行性以及职业增强核心提供行政支持； 在梅奥诊所建立生物统计学家，该诊所将为协议开发提供支持，研究的建设 设计，CDG注册表，统计数据分析，参与站点的数据收集；并建立和 维护CDG生物库和各种OMICS活动。 它还将确保财团的使命达到CDG中实现临床和科学目标的使命；保证 西雅图梅奥诊所的糖基化专业诊所的先天性疾病纳入和参与 费城儿童医院和儿童医院；促进研究者前往相关财团 会议，协调和支持RDCRN范围内的努力，以开发和监视临床和 研究数据处理和使用，包括使用常见数据元素（CDE）；维持网络环境 这使有关患者及其家人以全面的方式访问CDG的信息， 公众，对待医生以及那些不在该领域的培训和感兴趣的研究人员。 最后，它将促进CDG护理与财团调查员之间合作的强大平台 产生高生产力的协同作用，可以增加患者参与临床研究；建立和 协调每月基于Web的电话或电话会议，每年2倍面对面的临床项目会议和核心负责人 调查人员，CDG护理和SC分享经验，相互学习并收集有关的信息 资源和科学项目；并为财团的所有参与者安排年度务虚会。 外部顾问委员会协调有关财团研究发展的信息和沟通 患者倡导团体，临床医生，研究人员，整个科学界和公众。 糖基化联盟的先天性疾病中边境的行政核心的影响是 行政责任的集中化将促进个人之间的协同作用和沟通 项目和核心允许综合领导，进度监控，数据分析和解释。