Administrative Core

北美线粒体疾病联合会(NAMDC)的管理核心 将提供关键的组织和战略支持，以确保 根据美国国立卫生研究院罕见疾病临床研究网络(RDCRN)计划 目标。核心有一个总体方案主任/首席调查员，一个统计 首席研究员、临床团队联络员、生物信息学家和管理人员 协调员，对该计划的科学、临床研究和 培训/教育业务。这些人加上七个NAMDC站着的主席 委员会(数据使用委员会、生物库委员会、培训计划委员会、 试点/新项目方案委员会、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组织 NAMDC执行委员会(EC)的代表。教统会定期开会，评估 NAMDC计划(协议、倡议等)的进展，设定了长期战略目标 ，并定义联合体与之交互的术语和规则 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)，由研究人员、临床医生组成 以及耐心的倡导者，为财团领导层和欧盟委员会提供建议。行政部门 CORE还维护着三个独立的网站，1)一个内部网站来管理内部 与NAMDC网站的文档和通信；2)患者远程登记网站，以及 3)与RDCRN协调的外部网站，公开传达NAMDC的使命 以及提供培训机会和核心服务的其他具体职能包括 财务管理、分包合同/联合体协议的管理、与 NIH方案工作人员和RDCRN指导委员会，冲突/冲突的解决 兴趣，并促进与患者权益倡导团体(包括美国 线粒体疾病基金会(UMDF)核心的具体目标是：1)提供 向NAMDC提供广泛的行政支持，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以外的调查人员共享，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.