Admin Core

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ADMINISTRATIVE CORE-ABSTRACT/PROJECT SUMMARY The goal of the Administrative Core of the Frontiers in Congenital Disorders of Glycosylation Consortium is to facilitate a well-organized, well-executed program and provide responsible time and fiscal management to facilitate Congenital Disorders of Glycosylation (CDG) research. The Core will also play the lead role in maintaining continuous communication within the program, supporting relationships across projects and cores. It will serve as the link to RDCRC program oversight, contact among other clinical and diagnostic sites across the U.S., and collaboration and resource sharing within Mayo Clinic. The Administrative Core will provide leadership and collaboration between the Clinical Projects and Cores of the Consortium, establish the RDCRC infrastructure including the Administrative Directors (Drs. Eva Morava and Gerard T. Berry), project leads, core leads and co- investigators; provide administrative support to the Pilot and Feasibility and the Career Enhancement Core; establish the biostatistician at Mayo Clinic who will provide support for protocol development, construction of study designs, CDG Registries, statistical data analyses, collection of data from the participating sites; and establish and maintain CDG biobanks and the various omics activities. It will also ensure the Consortium's mission of reaching clinical and scientific goals in CDGs is achieved; assure incorporation and participation of Congenital Disorders of Glycosylation specialty clinics at Mayo Clinic, Seattle Children's Hospital and Children's Hospital of Philadelphia; facilitate investigator trips to relevant Consortium meetings, coordinate and support RDCRN-wide efforts to develop and monitor best practices for clinical and research data handling and use, including the use of Common Data Elements (CDEs); maintain a web environment that renders information on CDGs accessible in a comprehensive way for patients and their families, the general public, treating physicians and those in-training and interested researchers not in the field. Lastly, it will facilitate a strong platform for collaboration between CDG-Care and Consortium investigators to produce a highly productive synergy that increases patient engagement in clinical research; establish and coordinate monthly web-based or conference calls, 2X a year face-to-face meetings of clinical project and core lead investigators, CDG-Care and the SC to share experiences, learn from each other, and gather information about resources and scientific projects; and arrange yearly retreats for all participants of the consortium extended with the External Advisory Board Coordinate information and communication about Consortium research developments to patient advocacy groups, clinicians, investigators, the scientific community at large, and the public. The Administrative Core on the Frontiers in Congenital Disorders of Glycosylation Consortium's impact is such that centralization of administrative responsibilities will promote synergy and communication between the individual Projects and Cores to allow for integrated leadership, progress monitoring, data analysis and interpretation.