Developmental Synaptopathies Associated with TSC, PTEN and SHANK3 Mutations Administrative Core

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An efficient administrative structure is essential to the design and implementation of the Developmental Synaptopathies Consortium (DSC). The overarching goal of the Administrative Core is to create an environment in which scientific research relevant to the goals of the DSC can be effectively and efficiently designed, conducted and disseminated. This Core was very successful in establishing an administrative and management structure for the DSC in the first five years of funding and has worked closely with patient advocacy groups to raise additional funds, recruit subjects and disseminate information with respect to the three rare disorders: TSC, PHTS and PMS. The Core will be staffed by senior physician/scientists as well as a biostatistician, a project manager and a regulatory manager, all of whom are experienced in multi-site clinical research projects. The Administrative Core focuses on facilitating communication, collaboration, planning, data sharing, and scientific and fiscal oversight of all research projects for the DSC. The Administrative Core will organize the investigator launch meeting as well as the Executive Advisory Committee, Scholarly Awards Committee, Steering Committee, study staff and neuropsychologist meetings at regular intervals. The Administrative Core will be responsible for the following Specific Aims: 1) coordinating clinical research projects across all three rare disorders leveraging the expertise of the neuropsychology and biomarker teams; 2) developing superior core processes (Pilot Feasibility Core and Career Enhancement Core), meeting the needs of investigators and trainees; 3) serving as a liaison to other organizations, including PAGs, the NIH, and the RDRCN Network; 4) disseminating the results of DSC-related research to the patient and investigator communities; 5) promoting a cohesive and integrated consortium in order to maximize the combined efforts of our investigators and resources – which will be achieved through detailed communication and operational planning; and 6) providing outstanding administrative leadership with respect to managing day- to-day operations and maintaining high-quality, efficient and cost-effective services throughout the DSC.