Admin Core

行政核心--摘要/项目摘要 先天性糖基化疾病前沿管理核心的目标是 促进组织良好、执行良好的计划，并提供负责任的时间和财务管理以促进 先天性糖基化紊乱(CDG)的研究核心还将在维护 在计划内持续沟通，支持跨项目和核心的关系。 它将作为RDCRC项目监督的链接，联系全国各地的其他临床和诊断站点 以及梅奥诊所内部的协作和资源共享。行政核心将提供领导 以及临床项目和联盟核心之间的合作，建立RDCRC基础设施 包括行政主任(Eva Morava博士和Gerard T.Berry博士)、项目负责人、核心负责人和联合 调查员；为飞行员和可行性及职业发展核心提供行政支助； 在梅奥诊所设立生物统计师，为方案的制定、研究的建设提供支持 设计、CDG注册、统计数据分析、从参与站点收集数据；以及建立和 维护CDG生物库和各种组学活动。 它还将确保实现该联盟在CDGs方面实现临床和科学目标的使命；确保 西雅图梅奥诊所先天性糖基化障碍专科诊所的纳入和参与 费城儿童医院和儿童医院；为调查人员前往相关联盟提供便利 会议，协调和支持RDCRN范围内的努力，以开发和监测临床和 研究数据处理和使用，包括通用数据元素(CDE)的使用；维护网络环境 这使得患者及其家人可以全面地访问关于CDG的信息，一般 公众、治疗医生和那些正在接受培训的人，以及对该领域以外的研究人员感兴趣的人。 最后，它将促进CDG-Care和财团调查人员之间的强大合作平台，以 产生高效的协同效应，提高患者对临床研究的参与度；建立和 协调每月基于网络的会议或电话会议，每年2次临床项目和核心领导的面对面会议 调查人员、CDG-Care和SC分享经验，相互学习，并收集关于 资源和科学项目；并为联盟的所有参与者安排年度务虚会 外部咨询委员会协调有关财团研究进展的信息和沟通，以 患者权益倡导团体、临床医生、研究人员、整个科学界和公众。 糖基化联合体对先天性疾病前沿的行政核心影响是这样的 行政责任的集中将促进个人之间的协同和沟通 项目和核心，以便进行综合领导、进度监测、数据分析和解释。

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.