Admin Core

行政核心-摘要/项目摘要 先天性糖基化疾病联盟前沿管理核心的目标是 促进一个组织良好，执行良好的计划，并提供负责任的时间和财务管理，以促进 先天性糖基化障碍（CDG）研究。核心还将发挥主导作用， 项目内的持续沟通，支持跨项目和核心的关系。 它将作为RDCRC项目监督的链接，在整个 美国，以及马约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（伊娃·莫拉瓦博士和杰勒德·T. Berry）、项目负责人、核心负责人和共同负责人。 调查员;为试点和可行性以及职业提升核心提供行政支持; 在马约诊所设立生物统计学家，为方案制定、研究构建提供支持 设计、CDG登记研究、统计数据分析、从参与研究中心收集数据;以及建立和 维持CDG生物库和各种组学活动。 它还将确保联盟实现CDG临床和科学目标的使命;确保 西雅图马约诊所先天性糖基化疾病专科诊所的合并和参与 儿童医院和费城儿童医院;协助研究者前往相关联盟 会议，协调和支持RDCRN范围内的工作，以制定和监测临床和 研究数据的处理和使用，包括公共数据元素（CDE）的使用;维护网络环境 使患者及其家属能够全面了解CDG的信息， 公众、治疗医生和那些在培训和感兴趣的研究人员不在该领域。 最后，它将为CDG-Care和联盟调查人员之间的合作提供一个强大的平台， 产生高效的协同作用，增加患者在临床研究中的参与;建立和 协调每月的网络电话会议，每年2次临床项目和核心负责人的面对面会议 研究者，CDG-Care和SC分享经验，相互学习，并收集有关 资源和科学项目;并为联合体的所有参与者安排年度务虚会， 外部咨询委员会协调有关联合体研究进展的信息和沟通， 患者权益团体、临床医生、研究人员、科学界和公众。 先天性糖基化疾病前沿管理核心联盟的影响是这样的， 行政责任的集中将促进个人之间的协同作用和沟通， 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.