RDCRC Administrative Unit

RDCRC行政单位

• 批准号: 7885746
• 负责人: Chester B. Whitley
• 金额: $ 11.21万
• 依托单位: UNIVERSITY OF MINNESOTA
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-07-01 至 2014-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7885746
• 关键词: Administrator; Advisory Committees; Back; Basic Science; Businesses; Committee Members; Communication; Data; Data Base Management; Disease; Documentation; Ensure; Family; Foundations; Funding; Future; Grant; Head; Individual; Industry; Informatics; Leadership; Left; Longitudinal Studies; Maintenance; Monitor; Newsletter; Patients; Pediatrics; Persons; Pilot Projects; Policies; Principal Investigator; Publications; Recommendation; Research; Research Activity; Research Personnel; Role; Running; Scientific Evaluation; Site; Site Visit; Teleconferences; Time; Update; Vision; Work; authority; clinical application; human subject; medin; meetings; member; patient advocacy group; pediatric department; professor; symposium; web site

Dr. Chester B. Whitley is the Principal Investigator of this project. His responsibilities will include the overall direction and vision of the Lysosomal Disease Network, acting as both scientific and administrative leader of the Network. He will supervise Ms. Diethelm-Okita and Mr. David Erickson. He will work with all Principal Investigators to ensure a timely start and a maintenance of activities for each project. He will work with the projects to develop synergy and focus for the Network. He will chair the Lysosomal Steering Committee and direct the WORLD symposium meetings. Dr. Whitley is a Professor in the Department of Pediatrics and responsible to Dr. Aaron Friedman, head of Pediatrics. Dr. Elsa Shapiro is the Co-Principal Investigator of this project. As such, her responsibilities will be as a back-up to Dr. Whitley in providing scientific and administrative leadership. In addition, she will supervise the Core activities and ensure that their activities are tied to the individual projects. Dr. Shapiro is a Professor in the Department of Pediatrics and responsible to Dr. Aaron Friedman, head of Pediatrics Ms. Brenda Diethelm-Okita, Administrative Coordinator will provide interface between the administrative core and individual projects; she will manage communication flow between projects and with the coordinating center. She will edit the monthly newsletter to LDN members. She will monitor human subjects issues for all projects; she will be the liaison to patient advocacy groups and industry. She will manage proposal applications for pilot studies. She will be the administrator for the Steering Committee and the Scientific Advisory Committee. She will be responsible for database management and documentation of budgetary outflow as well as communicating with financial managers. Mr. David Erickson, will coordinate Informatics for the Network. He will maintain and update the web-site; manage data inflow and outflow, interface with the DMCC; manage publication and information assets; fulfill IT responsibilities for servers; assist in coordinating conformity of all sites to common data and document formats. Governance: A senior Scientific Advisory Committee (SAC) will oversee the scientific aspects of the Network (Brady, Neufeld, Sly, Grabowski, Medin, and Keutzer); yearly evaluation of the scientific progress of each of the longitudinal studies and the pilot studies. They will have ultimate authority on governance, especially with regard to administrative issues. With the advice of the Steering Committee, they will decide on termination and funding of studies within the network. The LDN Steering Committee (Whitley, Shapiro, Grabowski, Pastores, Steiner, Walkley, Davidson, Barranger, Wedehase, Wilcox) will have a more active role in the running of the Network. Meetings regarding network problems and decisions will take place in monthly teleconferences, a mechanism that has been in place since 2005. They will meet in person yearly at the WORLD symposium and possibly a second time at the ASHG meetings. Decisions about site visits, changes in policy and direction, and progress of individual projects will be discussed regularly and recommendations sent to the SAC. LDN Steering Committee members will serve continuously through the grant period but can be asked to leave if they do not participate. Proposed new members of the Steering Committee need the majority approval of both the Steering Committee and SAC. The WORLD Symposium is an integral part of the LDN. It serves as a venue for presentation of research activities in the Network as well as basic science research that will provide the foundation for future clinical applications. It serves as a meeting place for the investigators, for members of the Network, for patients and their families, and for industry. It serves as a site for administrative activities such as meetings of the SAC and the LDN Network Steering Committee, and for the business meeting of the full membership of the LDN. Further description can be found in the Introductory section. The diagram in Figure 1 portrays the Administrative Core.

切斯特医生B。Whitley是该项目的首席研究员。他的职责将包括 总体方向和溶酶体疾病网络的愿景，作为网络的科学和行政领导。他将监督Diethelm-Okita女士和大卫埃里克森先生。他将与所有主要研究者合作，以确保及时启动和维护每个项目的活动。他将与项目合作，为网络发展协同作用和重点。他将主持溶酶体指导委员会，并指导世界研讨会会议。Whitley博士是儿科系的教授，对儿科主任Aaron Friedman博士负责。 博士艾尔莎夏皮罗是该项目的共同首席研究员。因此，她的职责将是作为惠特利博士在提供科学和行政领导方面的后备。此外，她将监督核心活动，并确保其活动与个别项目挂钩。Shapiro博士是儿科系的教授，对儿科主任Aaron Friedman博士负责。行政协调员Brenda Diethelm-Okita女士将在行政核心和各个项目之间提供接口;她将管理项目之间以及与协调中心之间的沟通。她将编辑每月通讯LDN成员。她将监测所有项目的人类受试者问题;她将成为患者倡导团体和行业的联络人。她将管理试点研究的提案申请。她将担任指导委员会和科学咨询委员会的管理员。她将负责数据库管理和预算流出的文件记录，并与财务管理人员沟通。 先生大卫埃里克森，将协调网络信息学。他将维护和更新网站;管理数据流入和流出，与DMCC接口;管理出版物和信息资产;履行服务器的IT责任;协助协调所有网站符合通用数据和文件格式。 治理：一个高级科学咨询委员会（SAC）将监督 网络（布雷迪，Neufeld，Sly，Grabowski，Medin和Keutzer）;每年评估每项纵向研究和试点研究的科学进展。他们将在治理方面拥有最终权力，特别是在行政问题上。他们将根据指导委员会的建议，决定网络内研究的终止和供资。LDN指导委员会（Whitley、Shapiro、Grabowski、Pastores、Steiner、Walkley、Davidson、Bethier、Wedehase、Wilcox）将在网络的运行中发挥更积极的作用。有关网络问题和决定的会议将在每月电话会议上举行，这一机制自2005年以来一直存在。他们将每年在世界研讨会上亲自会面，并可能在ASHG会议上第二次会面。有关实地考察、政策和方向的改变以及个别项目的进展的决定将定期进行讨论，并提出建议。 发送到SAC。LDN指导委员会成员将在资助期内持续服务，但如果他们不参加，可能会被要求离开。指导委员会的新成员需要得到指导委员会和SAC的多数批准。 世界研讨会是LDN的一个组成部分。它是网络研究活动以及基础科学研究的展示场所，为未来的临床应用奠定基础。它是研究人员、网络成员、患者及其家属和行业的聚会场所。它是SAC和LDN网络指导委员会会议等行政活动的网站，也是LDN全体成员举行业务会议的网站。更多描述见引言部分。图1中的图表描绘了管理核心。