Administrative Core for the Porphyrias Consortium

卟啉症联盟的行政核心

• 批准号: 10701880
• 负责人: Robert J Desnick
• 金额: $ 134.57万
• 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/10701880
• 关键词: American; Award; Awareness; Budgets; Clinical; Clinical Investigator; Clinical Research; Clinical Trials; Clinical Trials Design; Collaborations; Communication; Data; Development; Diagnosis; Education; 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; Training; United States National Institutes of Health; Universities; Update; Utah; Work; X Inactivation; 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.

卟啉症联合体行政核心