Research Project
10241407
ADMINISTRATIVE CORE ABSTRACT The Administrative Core (AC) is responsible for the overall management and oversight of the Rare Disease Clinical Research Consortia (RDCRC) including developing and implementing policies and procedures, allocating funds, and integrating activities across the 16 sites. The functions of AC include coordinating communication among the sites and integrating participating researchers into a cohesive environment. Additionally, the AC will serve as the point of coordination with the Rare Disease Clinical Research Network (RDCRN) via the Data Management and Coordinating Center (DMCC) and the patient and stakeholder communities through the National Urea Cycle Disorders Foundation. The AC will include a Clinical Team Liaison who will ensure a mutually supportive interaction between the investigators conducting the clinical research projects. The AC will also include an Administrative Coordinator who will be responsible for assisting the Urea Cycle Disorders Consortium (UCDC) PIs with day-to-day administration and program coordination activities. The AC will 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. The AC will maintain a website to inform patients, families, clinicians, researchers, and the general public about ongoing clinical studies in the consortium, resources provided by the DMCC, career enhancement opportunities in the Career Enhancement Core and relevant results from the research studies. The overall responsibilities of the of the AC are described in the following categories: Administration: (a) Overall vision, strategic planning, evaluation and coordination of all UCDC activities; (b) Budget management and resource allocation; (c) Review and supervision of pilot projects; and (d) Organizing Executive Committee, faculty and staff, and External Advisory Committee meetings. Research: (a) Assure efficiency and cost-effectiveness of research projects; and (b) Foster and promote translational research and transdisciplinary collaborations among investigators at the participating institutions. Career Enhancement and Education: (a) Provide mentoring, administrative support and supervision for the career development program; (b) Attract and recruit junior investigators to the UCDC; (c) Facilitate the work of mentors within our training program; and (d) Support and oversee career development activities (grant writing, research projects, presentations, publications). Dissemination: Communicate our research findings by (a) Maintaining a robust website with information about ongoing research, and ways to participate in specific clinical trials and educational activities; b) Providing webcasts and archives on the website of the R25 lectures/seminars; and c) Promoting scientific publications of UCDC investigators.
