Administrative Core for the Porphyrias Consortium
卟啉症联盟的行政核心
基本信息
- 批准号:10251217
- 负责人:
- 金额:$ 135.36万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 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:
- 关键词:AmericanAwardAwarenessBudgetsClinicalClinical InvestigatorClinical ResearchClinical TrialsClinical Trials DesignCollaborationsCommunicationDevelopmentDiagnosisElectronic MailEnsureEpidemiologistErythropoietic PorphyriaEvaluationExpenditureFacultyFoundationsFundingFutureGeneticGoalsGrantHepatic PorphyriasIndividualIndustryInstitutional Review BoardsKnowledgeLeadershipLettersMonitorNational Institute of Diabetes and Digestive and Kidney DiseasesNewsletterPatient RecruitmentsPatientsPhysiciansPilot ProjectsPoliciesPorphyriasPrivatizationProblem SolvingProceduresProgram ReviewsProgress ReportsProtocols documentationResearchResearch PersonnelResearch Project GrantsResolutionSiteSite VisitTelephoneTimeTrainingUnited States National Institutes of HealthUniversitiesUpdateUtahWorkdata managementexperienceheme biosynthesisimprovedmeetingsmemberoperationparticipant enrollmentprogramssuccesssymposiumtrial designweb site
项目摘要
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
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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Robert J Desnick其他文献
520 RAPID PRENATAL DIAGNOSIS OF FABRY'S DISEASE
- DOI:
10.1203/00006450-197804001-00525 - 发表时间:
1978-04-01 - 期刊:
- 影响因子:3.100
- 作者:
Robert J Desnick;Raman M Reddy - 通讯作者:
Raman M Reddy
Alpha-L-iduronidase Deficiency in a Cat: A Model of Mucopolysaccharidosis I
猫的α-L-艾杜糖苷酶缺乏症:黏多糖贮积症 I 型的一个模型
- DOI:
10.1203/00006450-197911000-00018 - 发表时间:
1979-11-01 - 期刊:
- 影响因子:3.100
- 作者:
Mark E Haskins;Peter F Jezyk;Robert J Desnick;Susan K Mcdonough;Donald F Patterson - 通讯作者:
Donald F Patterson
ENZYME MANIPULATION: EVALUATION OF ORAL ZnSO4 SUP-PLEMENTATION IN MANNOSIDOSIS TYPE II
- DOI:
10.1203/00006450-197704000-00520 - 发表时间:
1977-04-01 - 期刊:
- 影响因子:3.100
- 作者:
Gregory A Grabowski;Linda L Walling;Justus U Ikonne;Leonhard S Wolfe;Robert J Desnick - 通讯作者:
Robert J Desnick
From Hereditary Cancer Syndrome to Sporadic Cancer Etiology: Genetic Linkage of DMS-MFH to Chromosome 9p21-22 • 724
- DOI:
10.1203/00006450-199804001-00745 - 发表时间:
1998-04-01 - 期刊:
- 影响因子:3.100
- 作者:
John A Martignetti;Robert J Desnick;Bruce D Gelb - 通讯作者:
Bruce D Gelb
Mannosidosis: Clinical, Morphologic, Immunologic, and Biochemical Studies
- DOI:
10.1203/00006450-197612000-00008 - 发表时间:
1976-12-01 - 期刊:
- 影响因子:3.100
- 作者:
Robert J Desnick;Harvey L Sharp;Gregory A Grabowski;Richard D Brunning;Paul G Quie;Joo H Sung;Robert J Gorlin;Justus U Ikonne - 通讯作者:
Justus U Ikonne
Robert J Desnick的其他文献
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{{ truncateString('Robert J Desnick', 18)}}的其他基金
Administrative Core for the Porphyrias Consortium
卟啉症联盟的行政核心
- 批准号:
10019516 - 财政年份:2009
- 资助金额:
$ 135.36万 - 项目类别:
Porphyria Rare Disease Clinical Research Consortium (RDCRC)
卟啉症罕见病临床研究联盟 (RDCRC)
- 批准号:
7680477 - 财政年份:2009
- 资助金额:
$ 135.36万 - 项目类别:
Porphyria Rare Disease Clinical Research Consortium (RDCRC)
卟啉症罕见病临床研究联盟 (RDCRC)
- 批准号:
8765263 - 财政年份:2009
- 资助金额:
$ 135.36万 - 项目类别:
Administrative Core for the Porphyrias Consortium
卟啉症联盟的行政核心
- 批准号:
10701880 - 财政年份:2009
- 资助金额:
$ 135.36万 - 项目类别:
Porphyria Rare Disease Clinical Research Consortium (RDCRC)
卟啉症罕见病临床研究联盟 (RDCRC)
- 批准号:
8733795 - 财政年份:2009
- 资助金额:
$ 135.36万 - 项目类别:
Porphyria Rare Disease Clinical Research Consortium (RDCRC)
卟啉症罕见病临床研究联盟 (RDCRC)
- 批准号:
8545582 - 财政年份:2009
- 资助金额:
$ 135.36万 - 项目类别:
Porphyria Rare Disease Clinical Research Consortium (RDCRC)
卟啉症罕见病临床研究联盟 (RDCRC)
- 批准号:
8934078 - 财政年份:2009
- 资助金额:
$ 135.36万 - 项目类别:
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