Administrative Core

北美线粒体疾病联盟（NAMDC） 将提供关键的组织和战略支持，以确保 NIH罕见病临床研究网络（RDCRN） 目标.核心有一个总体方案主任/主要研究者，一个统计 主要研究者、临床团队联络员、生物信息学家和管理人员 协调员，最终负责该计划的科学，临床研究和 培训/教育活动。这些人加上全国民主与发展委员会七个常设委员会的主席 委员会（数据使用委员会，生物储存委员会，培训计划委员会， 试点/新项目计划委员会，出版物委员会，网站委员会，和 诊断委员会），两名NIH代表和一名患者倡导小组 NAMDC执行委员会（EC）的代表。委员会定期举行会议， NAMDC方案的进展情况（议定书、倡议等），确立长远战略目标 为联合体，并定义的条款和规则，联合体互动， 外部实体（患者倡导团体、非NAMDC研究人员、行业等）。NAMDC 还将建立一个外部咨询委员会（EAC）， 和病人的倡导者，以建议财团的领导和EC。行政 核心还保持三个独立的网站，1）内部网站，以管理内部 与NAMDC研究中心的文件和通信; 2）患者远程入组网站，以及 3)与RDCRN协调的外部网站，公开传达NAMDC的使命 其他具体职能包括： 财务管理、管理合同/联营体协议、与 NIH计划工作人员和RDCRN指导委员会，解决冲突/ 利益，并促进与病人的宣传团体，包括联合国 线粒体疾病基金会（UMDF）核心的具体目标是：1）提供 向NAMDC提供基础广泛的行政支助，2）与欧共体和东非共同体合作，确保 NAMDC的运作有利于线粒体疾病研究和患者社区，3） 管理NAMDC的内部和外部沟通，4）促进合作和资源 与NAMDC以外的调查人员分享，以及5）加强现有联系并建立新的联系， 可以支持NAMDC的外部组织。

The Administrative Core of the North American Mitochondrial Disease Consortium (NAMDC) will provide critical organizational and strategic support to assure the overall success of the Program in accordance with NIH Rare Disease Clinical Research Network (RDCRN) program objectives. The Core has an Overall Program Director/ Principal Investigator, a Statistical Principal Investigator, a Clinical Team Liaison, a Bioinformatician, and an Administrative Coordinator, with ultimate responsibility for the Program’s scientific, clinical research and training/educational operations. These individuals plus Chairs of the seven NAMDC Standing Committees (Data Use Committee, Biorepository Committee, Training Program Committee, Pilot/New Project Program Committee, Publications Committee, Website Committee, and Diagnostic Committee), two NIH Representatives, and one Patient Advocacy Group representative form the NAMDC Executive Committee (EC). The EC meets regularly to assess the progress of NAMDC programs (protocols, initiatives etc.), set the long-term strategic goals for the Consortium, and define the terms and rules by which the Consortium interacts with outside entities (Patient Advocacy Groups, non-NAMDC researchers, Industry etc.). NAMDC will also establish an External Advisory Committee (EAC) composed of researchers, clinicians and patient advocates to advise the Consortium’s leadership and the EC. The Administrative Core also maintains three independent websites, 1) an internal website to manage internal documents and communications with NAMDC sites; 2) a patient remote enrollment website, and 3) an external website coordinated with RDCRN to publicly communicate NAMDC’s mission and the availability of training opportunities and core services Other specific functions include fiscal management, administration of subcontract/consortium agreements, communication with NIH Program staff and the RDCRN Steering Committee, resolution of conflicts/conflicts of interest, and facilitating interactions with patient advocacy groups including the United Mitochondrial Disease Foundation (UMDF).. The specific aims of the Core are to: 1) provide broad-based administrative support to NAMDC, 2) work with the EC and EAC to ensure that NAMDC operates to benefit the mitochondrial disease research and patient communities, 3) manage NAMDC’s internal and external communications, 4) promote collaboration and resource sharing with investigators outside NAMDC, and 5) strengthen existing and build new links to external organizations that can support NAMDC.