Administrative Core

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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.