Administrative Core for the Porphyrias Consortium

Porporrias联合体行政核心 摘要 卟啉病联盟(PC)管理核心的主要目标，称为PC指导 委员会(PCSC)正在加快开发和探索新知识，以提高诊断水平 以及治疗肝性和红细胞生成性门静脉症患者。筹委会将继续 负责筹委会的整体运作，包括政策、程序和资金分配。具体来说， 筹委会将继续负责项目的总体指导、遴选和评估，并 试点/示范项目、现场活动的协调、实习生计划和财团的资金。 这些活动将由ISMMS的PI与行政协调员一起负责 联合国国家臭氧机构和筹委会，其组成人员包括：国际和平协会、行政协调员、协理行政 协调员(同时也是临床小组联络人)，其他四个地点的高级和关键调查人员 (UTMB、UCSF、WF和UAB)，以及美国血吸虫病基金会(APF)的联合执行董事， Desiree Lyon Howe夫人和Kristen Wheeden夫人。此外，委员会的当然(无表决权)成员 PCSC包括我们的资深遗传流行病学家和生物统计学家Inga Peter博士和Jessica夫人 让我们的生物统计师具备临床试验设计经验。当然委员出席我们的 电话会议和面对面的季度会议，并向指导委员会提供宝贵意见 商议。PCSC将继续在NIH每季度与我们的NIH/NIDDK和ORD举行面对面的会议 顾问，并将继续每月举行电话会议，其中包括数据和管理 协调中心，以审查计划进度，解决出现的问题，并计划新的协议、修订或 项目。

PORPHYRIAS CONSORTIUM ADMINISTRATIVE CORE ABSTRACT The major objective of the Administrative Core of the Porphyrias Consortium (PC), designated the PC Steering Committee (PCSC) is to expedite the development and exploration of new knowledge to improve the diagnosis and treatment of patients with the hepatic and erythropoietic porphyrias. The PCSC will continue to be responsible for the overall operations of the PC including policy, procedure, and fund allocation. Specifically, the PCSC will continue to be responsible for the overall direction, selection, and evaluation of projects and pilot/demonstration projects, coordination of site activities, trainee programs, and finances of the Consortium. These activities will be the responsibility of the PI at ISMMS, together with the Administrative Coordinator at UoU and the PCSC, which is composed of the PI, the Administrative Coordinator, Associate Administrative Coordinator (who is also the Clinical Team Liaison), the senior and key investigators of the other four sites (UTMB, UCSF, WF, and UAB), and the Co-Executive Directors of the American Porphyria Foundation (APF), Mrs. Desiree Lyon Howe and Mrs. Kristen Wheeden. In addition, the ex-officio (non-voting) members of the PCSC include Dr. Inga Peter, our senior expert genetic epidemiologist and biostatistician, and Mrs. Jessica Overbey our biostatistician with experience in clinical trial design. The ex-officio members attend our conference calls and face-to-face quarterly meetings, and provide valued input into the Steering Committee deliberations. The PCSC will continue to meet face-to-face quarterly at the NIH with our NIH/NIDDK and ORD Advisors, and will continue to have monthly telephone conferences, which include the Data and Management Coordinator Center, to review program progress, solve problems arising, and plan new protocols, revisions or projects.