Administrative Core

行政核心摘要 行政核心（AC）负责罕见病的整体管理和监督 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。 AC 的功能包括协调 站点之间的沟通，并将参与的研究人员融入一个有凝聚力的环境中。 此外，AC 将充当罕见疾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向社区提供帮助。 AC 将包括一名临床团队联络员 谁将确保进行临床研究的研究者之间相互支持的互动 项目。审计委员会还将包括一名行政协调员，负责协助尿素部门 周期障碍联盟 (UCDC) PI 负责日常管理和项目协调活动。的 AC 将协调和支持 RDCRN 范围内的努力，以开发和监测临床和治疗的最佳实践 研究数据处理和使用，包括通用数据元素的使用。审计委员会将维护一个网站 向患者、家属、临床医生、研究人员和公众通报正在进行的临床研究 联盟、DMCC 提供的资源、职业提升中的职业提升机会 研究的核心和相关结果。描述了审计委员会的总体职责 分为以下几类： 行政： (a) 所有 UCDC 活动的总体愿景、战略规划、评估和协调； (二) 预算管理和资源分配； (c) 试点项目的审查和监督； (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) 培养和促进 参与机构的研究人员之间的转化研究和跨学科合作。 职业提升和教育： (a) 为职业发展提供指导、行政支持和监督 职业发展计划； (b) 吸引和招募初级调查员加入 UCDC； (c) 促进工作 我们培训计划中的导师； (d) 支持和监督职业发展活动（拨款申请、 研究项目、演示文稿、出版物）。 传播：通过 (a) 维护一个包含以下信息的强大网站来传播我们的研究成果： 正在进行的研究，以及参与特定临床试验和教育活动的方式； b) 提供 R25 讲座/研讨会网站上的网络广播和档案； c) 推广科学出版物 UCDC 调查员。

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.