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Grant Abstract: NAMDC: Overall Research Plan

Grant Number: 5U54NS078059-05
PI Name: Hirano
Project Title: NAMDC: Overall Research Plan

Abstract: 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 Center in accordance with NIH Rare Disease Clinical Research Network (RDCRN) programmatic objectives. The Core will have a Principal Investigator, Administrative Director, and Statistical Director with ultimate responsibility for the Center's scientific, clinical research and training/educational operations. These individuals plus three other NAMDC investigators will form an Executive Committee that meets regularly to assess and evaluate the program and its operations. An External Advisory Committee composed of researchers, clinicians and patient advocates will advise the Center's leadership and Executive Committee. The specific aims of the Core are 1) to provide broad-based administrative support to NAMDC, 2) work with the External Advisory Committee to assure that NAMDC operates to benefit the mitochondrial disease research and patient communities, 3) manage the internal and external communications of NAMDC, and 4) promote collaboration with investigators outside of NAMDC and assure sharing of resources. Other specific functions include fiscal management, administration of subcontract/consortium agreements, communication with NIH Program staff and the RDCRN Steering Committee, resolution of unlikely conflicts/conflicts of interest and facilitating interactions with patient advocacy groups including the United Mitochondrial Disease Foundation (UMDF). The Core will also maintain an internal website to manage internal documents and communications with NAMDC sites as well as an external website to publically communicate NAMDC's mission and the availability of training opportunities and core services.

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