Administrative Core

行政核心摘要 行政核心(AC)负责对这种罕见疾病的全面管理和监督 临床研究联盟(RDCRC)，包括制定和实施政策和程序， 分配资金，并整合16个地点的活动。协调委员会的职能包括协调 网站之间的交流，并将参与的研究人员整合到一个有凝聚力的环境中。 此外，AC将作为与罕见病临床研究网络的协调点 (RDCRN)通过数据管理和协调中心(DMCC)以及患者和利益相关者 通过国家尿素循环障碍基金会为社区提供帮助。咨询委员会将包括一名临床小组联络员 世卫组织将确保进行临床研究的研究人员之间的相互支持互动 项目。咨询委员会还将包括一名行政协调员，负责协助尿素 周期紊乱联盟(UCDC)具有日常管理和计划协调活动的绩效指标。这个 AC将协调和支持RDCRN范围内的努力，以开发和监测临床和 研究数据处理和使用，包括常用数据元素的使用。咨询委员会将维持一个网站，以 告知患者、家属、临床医生、研究人员和公众正在进行的临床研究 财团，DMCC提供的资源，职业提升计划中的职业提升机会 研究的核心和相关结果。介绍了审计委员会的总体职责。 在以下类别中： 行政：(A)全面设想、战略规划、评价和协调所有的合作与合作活动；(B) 预算管理和资源分配；(C)审查和监督试点项目；(D)组织 执行委员会、教职员工和外部咨询委员会会议。 研究：(A)确保研究项目的效率和成本效益；(B)促进和促进 参与机构的研究人员之间的翻译研究和跨学科合作。 职业发展和教育：(A)为以下人员提供指导、行政支助和监督 职业发展方案；(B)吸引和征聘初级调查员到UCDC；(C)促进 培训方案中的导师；以及(D)支持和监督职业发展活动(赠款撰写、 研究项目、演讲、出版物)。 传播：通过以下方式传播我们的研究成果：(A)维护一个强大的网站，提供以下信息 正在进行的研究，以及参与具体临床试验和教育活动的方式；b)提供 在R25讲座/研讨会的网站上进行网络广播和档案；以及c)促进 UCDC调查人员。

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.