Administrative Core

行政核心

基本信息

批准号：
10023964
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
项目类别：
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/10023964
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

项目摘要

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.

北美线粒体疾病联盟 (NAMDC) 的管理核心将提供关键的组织和战略支持，以确保整体成功计划符合 NIH 罕见病临床研究网络 (RDCRN) 计划核心有一名总体项目总监/首席研究员、一名统计人员。首席研究员、临床团队联络员、生物信息学家和行政人员协调员，最终负责该计划的科学、临床研究和这些个人以及七名 NAMDC 常务主席。委员会（数据使用委员会、生物样本库委员会、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 EC 定期召开会议进行评估。 NAMDC 计划（协议、举措等）的进展，设定长期战略目标为联盟，并定义联盟互动的条款和规则外部实体（患者权益团体、非 NAMDC 研究人员、行业等）。还将建立一个由研究人员组成的外部咨询委员会（EAC），和患者权益倡导者向联盟领导层和行政委员会提供建议。 Core还维护着三个独立的网站，1）一个内部网站，用于管理内部与 NAMDC 站点的文件和通信；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 的使命以及培训机会和核心服务的可用性其他具体功能包括财务管理、分包/联合体协议的管理、与 NIH 项目工作人员和 RDCRN 指导委员会，解决冲突/冲突兴趣，并促进与包括联合国在内的患者倡导团体的互动线粒体疾病基金会 (UMDF).. 核心的具体目标是： 1) 提供为 NAMDC 提供基础广泛的行政支持，2) 与 EC 和 EAC 合作，确保 NAMDC 致力于造福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) 促进协作和资源与 NAMDC 外部的研究人员共享，以及 5) 加强现有的联系并建立新的联系可以支持 NAMDC 的外部组织。