Administrative Core - Novel Therapeutics for FSHD

项目总结 行政核心A将负责规划、开发、协调和统筹 马萨诸塞大学医学院(UMMS)Wellstone MD CRC的管理重点是 面部肩周性肌营养不良症(FSHD)。中心的领导将在查尔斯博士的领导下继续下去 爱默生在密歇根州立大学，路易斯·昆克尔博士在波士顿儿童医院，凯瑟琳·瓦格纳在肯尼迪·克里格医院，都是 经验丰富的研究管理人员和有成就的科学家。核心A的管理单位 将设在UMMS，该公司拥有丰富的资源、人员和管理经验 P50中心。核心A将成为管理中心所有资源和通信的管理中心， 执行政策和程序，建立充满活力的环境，以实现有效沟通 以及中心所有成员之间的合作，包括调查人员、受训人员、FSHD患者和 倡导团体、行业合作伙伴、美国国立卫生研究院和公众。中心将通过以下方式宣传其使命 网站，该网站传播有关中心活动、生物材料和研究的信息，并通过其 与患者倡导团体合作，特别是FSH协会，它是FSHD研究的共同赞助者 Workshop和研究人员-患者网络会议，以吸引患者、研究人员、实习生和NIH 在我们的中心任务中。通过核心A，该中心将促进其肌肉细胞系的分布 Wellstone FSHD细胞库作为一种独特的FSHD生物资源。内部委员会将启用中心 领导层、调查人员和受训人员有效利用资源、组织内部数据流和 交流，并接受关于中心管理、研究进展和培训的反馈。定期- 预定的网络会议将侧重于学员和PI数据共享和研究规划，以及 密歇根大学韦尔斯通中心的年度务虚会将使调查人员和受训人员与中心面对面 咨询委员会(CAC)和NIH项目负责人审查研究进展，设定目标并协调中心 与NIH W ellstone中心网络的活动。

PROJECT SUMMARY The Administrative Core A will be responsible for the planning, development, coordination, and overall administration of the University of Massachusetts Medical School (UMMS) W ellstone MD CRC focused on Facioscapulohumeral Muscular Dystrophy (FSHD). Center leadership will continue under Dr. Charles Emerson at UMMS, Dr. Louis Kunkel at Children's Boston, and Kathryn Wagner at Kennedy Krieger, all highly experienced research administrators and accomplished scientists. The administrative unit for Core A will be located at UMMS, which has substantial resources, personnel and experience for management of a P50 Center. Core A will be the administrative hub to manage all Center resources and communications and carry out policies and procedures that establish an energized environment to enable effective communication and collaboration among all the Center constituents, including investigators, trainees, FSHD patients and advocacy groups, industry partners, NIH and the public. The Center will promote its mission through its website, which disseminates information on Center activities, biomaterials and research, and through its partnership with patient advocacy groups, particularly the FSH Society, which co-sponsors FSHD Research W orkshops and Researcher-Patient Networking meetings to engage patients, researchers, trainees and NIH in our Center mission. Through Core A, the Center will promote the distribution of muscle cell lines from its W ellstone FSHD Cell Repository as a unique FSHD bio-resource. Internal committees will enable Center leadership, investigators and trainees to effectively utilize resources, organize internal dataflow and communications, and receive feedback on Center management, research progress and training. Regularly- scheduled web conference meetings will focus on trainee and PI data sharing and research planning, and an annual W ellstone Center Retreat at UMMS will bring investigators and trainees face-to-face with a Center Advisory Committee (CAC) and NIH program leaders to review research progress, set goals and align Center activities with the NIH W ellstone Center Network.