Administrative Core for the Porphyrias Consortium

卟啉症联盟的行政核心

• 批准号: 10019516
• 负责人: Robert J Desnick
• 金额: $ 135.74万
• 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/10019516
• 关键词: American; Award; Awareness; Budgets; Clinical; Clinical Investigator; Clinical Research; Clinical Trials; Clinical Trials Design; Collaborations; Communication; Development; Diagnosis; Electronic Mail; Enrollment; 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; 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.

卟啉症联盟管理核心 抽象的 卟啉联盟 (PC) 行政核心的主要目标，指定为 PC 指导 委员会（PCSC）将加快新知识的开发和探索，以改进诊断 以及治疗肝性和红细胞生成性卟啉症患者。 PCSC将继续 负责PC的整体运作，包括政策、程序和资金分配。具体来说， PCSC将继续负责项目和项目的总体指导、选择和评估 试点/示范项目、现场活动协调、培训计划以及联盟的财务。 这些活动将由 ISMMS 的 PI 以及以下机构的行政协调员负责： UoU 和 PCSC，由 PI、行政协调员、助理行政员组成 协调员（兼任临床团队联络员）、其他四个中心的高级和关键研究人员 （UTMB、UCSF、WF 和 UAB）以及美国卟啉症基金会 (APF) 的联合执行董事， 德西里·里昂·豪夫人和克里斯汀·惠登夫人。此外，当然（无投票权）成员 PCSC 包括我们的高级专家遗传流行病学家和生物统计学家 Inga Peter 博士和 Jessica 女士 Overbey 我们的生物统计学家具有临床试验设计经验。当然成员出席我们的会议 电话会议和面对面的季度会议，并向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 进行面对面的会议 顾问，并将继续每月举行电话会议，其中包括数据和管理会议 协调中心，审查项目进展，解决出现的问题，并规划新的方案、修订或 项目。