Administrative Core

Project Summary/Abstract 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 that has worked proficiently for the past ten years and has formed valuable partnerships with patient advocacy groups (PAGs) to identify priority areas and raise funding for additional projects and purposes of the DSC, recruit subjects and disseminate information with respect to the initial three rare disorders: TSC, PHTS and PMS, and is planning to do the same with the forth added rare disorder, SYNGAP1-ID. The Core will be staffed by the director, the clinical team liaison, the coordinator/project manager, the core/regulatory manager, the financial manager, the biostatistician and two bioinformaticians, one with expertise on neuropsychological assessments, who all 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 it has done for the past two grant cycles, as well as the Executive Advisory Committee, Steering Committee, Pilot Feasibility Core, Biomarker Core, Career Enhancement Core, and research 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 four rare disorders (TSC, PHTS, PMS and SYNGAP1-ID) leveraging the expertise of the neuropsychology, biomarker and biostatistics teams; 2) developing superior core processes (Pilot Feasibility Core and Career Enhancement Core) that best meet the needs of investigators, trainees and the community; 3) serving as a liaison to other organizations, including PAGs, the NIH, DMCC and the RDCRC 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 – 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.