Administrative Core

行政核心

• 批准号: 10670155
• 负责人: Andrea Lynne Gropman
• 金额: $ 38.78万
• 依托单位: CHILDREN'S RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-09-30 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10670155
• 关键词: Administrator; Advisory Committees; Advocacy; Advocate; Archives; Biometry; Budgets; Categories; Child; Classification; Clinical; Clinical Research; Clinical Trials; Common Data Element; Communication; Communications Media; Communities; Cost effectiveness research; Data Coordinating Center; Education; Educational Activities; Effectiveness; Electronic Mail; Ensure; Environment; Equity; Evaluation; Faculty; Family; Financial Support; Fostering; Foundations; Funding; General Population; Grant; Guidelines; Health Insurance Portability and Accountability Act; Home; Institution; Institutional Review Boards; Medical center; Mentors; Minority; Monitor; National Center for Advancing Translational Sciences; National Institute of Child Health and Human Development; Patients; Persons; Pilot Projects; Policies; Procedures; Productivity; Program Development; Progress Reports; Publications; Rare Diseases; Recommendation; Regulation; Research; Research Design; Research Personnel; Research Project Grants; Resolution; Resource Allocation; Resources; Site; Strategic Planning; Supervision; Telephone; Training Programs; Translational Research; United States National Institutes of Health; Urea cycle disorders; Vision; Woman; Work; Writing; career; career development; clinical practice; data handling; human subject protection; improved; interdisciplinary collaboration; lectures; meetings; operation; programs; recruit; research study; social media; symposium; web site

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.

管理核心摘要 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。咨询委员会的职能包括协调 研究中心之间的沟通，并将参与研究人员融入一个有凝聚力的环境。 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 国家尿素循环障碍基金会（National Urea Cycle Disorders Foundation）AC将包括一名临床团队联络员 确保进行临床研究的研究者之间相互支持的互动 项目AC还将包括一名行政协调员，负责协助Urea 周期性疾病联盟（UCDC）PI，负责日常管理和项目协调活动。的 AC将协调和支持RDCRN范围内的工作，以制定和监测临床和 研究数据的处理和使用，包括共同数据元素的使用。AC将维护一个网站， 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， 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。审计委员会的总体职责如下： 在以下类别中： 行政：（a）所有UCDC活动的总体构想、战略规划、评价和协调;（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转化研究和跨学科合作。 职业发展和教育：（a）为职业发展和教育提供指导、行政支助和监督， 职业发展计划;（B）吸引和招聘初级调查员到UCDC;（c）促进 在我们的培训计划导师;和（d）支持和监督职业发展活动（赠款写作， 研究项目、报告、出版物）。 传播：通过以下方式传播我们的研究结果：（a）维持一个强大的网站，提供以下信息： 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 在R25讲座/研讨会网站上进行网播和存档;以及 UCDC调查员。