Administrative Core

行政核心

• 批准号: 10265493
• 负责人: MICHIO HIRANO
• 金额: $ 19.73万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-30 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10265493
• 关键词: Academic Medical Centers; Administrator; Advisory Committees; Advocate; Agreement; American; Biometry; Birth; Clinical; Clinical Research; Collaborations; Communication; Communities; Conflict of Interest; Data; Development; Diagnostic; Educational process of instructing; Enrollment; Ensure; Ethics; Financial Support; Foundations; Funding; Goals; Grant; Growth; Human Resources; Individual; Industry; International; Leadership; Link; Mission; Mitochondria; Mitochondrial Diseases; Patients; Pharmacologic Substance; Policies; Principal Investigator; Protocols documentation; Publications; Rare Diseases; Registries; Research; Research Personnel; Research Training; Resource Sharing; Rosales; Services; Site; Source; Telecommunications; Training; Training Programs; United States National Institutes of Health; Visit; Work; base; biobank; conflict resolution; data mining; data sharing; design; effective therapy; interest; meetings; member; novel therapeutics; operation; patient advocacy group; payment; programs; success; symposium; training opportunity; web site; webinar

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.

北美线粒体疾病财团（NAMDC）的行政核心 将提供关键的组织和战略支持，以确保 根据NIH稀有疾病临床研究网络（RDCRN）计划的计划 目标。核心有一个总体计划主管/首席研究员，统计 首席研究员，临床团队联络人，生物信息学家和行政 协调员，对该计划的科学，临床研究和 培训/教育行动。这些人加七个NAMDC站立的椅子 委员会（数据使用委员会，生物官员委员会，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代表和一个患者倡导小组 NAMDC执行委员会（EC）的代表性形式。 EC定期开会以评估 NAMDC计划（协议，倡议等）的进度设定了长期战略目标 对于财团，并定义财团与之相互作用的术语和规则 外部实体（患者倡导组，非NAMDC研究人员，行业等）。 NAMDC 还将建立由研究人员，临床医生组成的外部咨询委员会（EAC） 患者主张为财团的领导和EC提供建议。行政 核心还维护三个独立网站，1）一个内部网站，用于管理内部 与NAMDC站点的文档和通信； 2）患者远程注册网站，以及 3）与RDCRN协调的外部网站，以公开交流NAMDC的任务 培训机会和核心服务的可用性其他特定功能包括 财政管理，分包合同/财团协议的管理，与 NIH计划人员和RDCRN指导委员会，解决冲突/冲突的解决 兴趣，并支持与包括曼联在内的患者倡导小组的互动 线粒体疾病基金会（UMDF）。核心的具体目的是：1）提供 对NAMDC的基于广泛的行政支持，2）与EC和EAC合作，以确保 NAMDC为有益于线粒体疾病研究和患者社区而运作，3） 管理NAMDC的内部和外部通信，4）促进协作和资源 与NAMDC以外的调查人员共享，5）加强现有并建立新的链接 可以支持NAMDC的外部组织。