Administrative Core for the Porphyrias Consortium

卟啉症联盟的行政核心

• 批准号: 10251217
• 负责人: Robert J Desnick
• 金额: $ 135.36万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-30 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10251217
• 关键词: American; Award; Awareness; Budgets; Clinical; Clinical Investigator; Clinical Research; Clinical Trials; Clinical Trials Design; Collaborations; Communication; Development; Diagnosis; Electronic Mail; Ensure; Epidemiologist; Erythropoietic Porphyria; Evaluation; Expenditure; Faculty; Foundations; Funding; Future; Genetic; Goals; Grant; Hepatic Porphyrias; Individual; Industry; Institutional Review Boards; Knowledge; Leadership; Letters; Monitor; National Institute of Diabetes and Digestive and Kidney Diseases; Newsletter; Patient Recruitments; Patients; Physicians; Pilot Projects; Policies; Porphyrias; Privatization; Problem Solving; Procedures; Program Reviews; Progress Reports; Protocols documentation; Research; Research Personnel; Research Project Grants; Resolution; Site; Site Visit; Telephone; Time; Training; United States National Institutes of Health; Universities; Update; Utah; Work; data management; experience; heme biosynthesis; improved; meetings; member; operation; participant enrollment; programs; success; symposium; trial design; web site

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.

聚生卟啉管理核心 摘要 Porphyrias联盟（PC）行政核心的主要目标，指定为PC指导 委员会（PCSC）是为了加快发展和探索新的知识，以提高诊断 以及治疗患有肝性和红细胞生成性卟啉症的患者。PCSC将继续 负责PC的整体运作，包括政策，程序和资金分配。具体地说， PCSC将继续负责项目的总体指导、选择和评估， 试点/示范项目、现场活动协调、培训生计划和财团财务。 这些活动将由ISMMS的PI与 协调员办公室和协调委员会，由主要研究员、行政协调员、助理行政协调员和行政协调员组成。 协调员（也是临床团队联络员）、其他四个研究中心的高级和关键研究者 (UTMB，UCSF，WF和UAB），以及美国卟啉病基金会（APF）的联合执行董事， 夫人德西蕾·里昂·豪和克里斯汀·惠登夫人此外，委员会的当然（无表决权）成员 PCSC包括Inga Peter博士，我们的高级专家遗传流行病学家和生物统计学家，以及Jessica女士 在临床试验设计方面拥有丰富经验的生物统计学家。当然委员出席我们的 电话会议和面对面的季度会议，并为指导委员会提供宝贵的意见 审议。PCSC将继续每季度在NIH与我们的NIH/NIDDK和ORD举行面对面会议 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，审查项目进展，解决出现的问题，并计划新的方案，修订或 项目