Overall Adminstration of Rare Diseases Clinical Research Consortia (RDCRC)

尿素循环障碍联盟的行政单位协调UCDC的所有活动，由UCDC首席研究员/主任Mark L， Batshaw， MD领导。联合首席研究员有特定的角色，以确保联盟顺利运作。Mendel Tuchman博士担任行政主管和联合负责人，在Batshaw博士不能参加时领导联盟，协助Batshaw博士进行联盟管理并指导临床和试点项目，Marshall Summar博士负责行业和国际关系，协助Batshaw博士进行ucdc管理，并与Brendan Lee博士共同指导培训计划。Cynthia LeMons是国家尿素循环障碍基金会的执行董事，也是UCDC领导层的顾问，在UCDC的重大决策中代表患者的利益。她还将指导UCDC与患者群体的外部沟通。来自儿童医学中心生物统计和研究设计部门的Robert McCarter博士和来自南佛罗里达大学数据管理和协调中心的Jeffrey Krischer博士将为UCDC领导提供研究设计和结果分析方面的建议。除了董事。贝勒医学院的Brendan Lee博士指导培训项目，项目经理Jennifer Seminara负责UCDC的运营，Arlene Gendron协助行政工作。UCDC每月召开一次电话会议，每年召开一次面对面会议：dmcc审计程序确保数据质量，并由UCDC项目经理指导的监控程序进行补充。

The Urea Cycle Disorders Consortium's Administrative Unit coordinates all UCDC activities and is led by UCDC principal investigator/director, Mark L, Batshaw, MD. Co-principal investigators have spefic roles to ensure that the Consortium operates smoothly. Dr. Mendel Tuchman serves as Administrative Director and Co-PI, leading the the consortium when Dr, Batshaw is unable to do so, assisting Dr. Batshaw with Consortium administration and directing the clinical and pilot projects, Co-Pl Marshall Summar is responsible for industry and international relationships,assists Dr. Batshaw withUCDC administration and with Dr. Brendan Lee co-directs the training program: Co-Pl Cynthia LeMons is the executive director of the National Urea Cycle Disorders Foundation and serves as an advisor to the UCDC leadership, representing patients' interests in major UCDC decisions. She will also direct external communications from the UCDC to the patient community. Dr. Robert McCarter from Biostatistics and Study Design Unit at Children's Medical Center and Dr. Jeffrey Krischer from the Data Management and Coordinating Center at University of South Florida will advise the UCDC leadership on study design and results analysis. In addition to the directors. Dr. Brendan Lee at Baylor College of Medicine directs the training program, project manager Jennifer Seminara is responsible for UCDC operations, and Arlene Gendron assists with administrative duties. The UCDC holds monthly conference calls and one annual in-person meeting: The DMCCs audit program ensures quality data and is supplemented by a monitoring program directed by the UCDC project manager.