Lysosomal Disease Network Administrative Core

溶菌体疾病网络管理核心将作为该联合体的中央单位， 提供组织和职能结构，使财团继续朝着实现 本申请书中陈述的研究目标。核心将成为外部咨询的联系点 委员会，管理与试点/可行性项目和职业提升相关的公告 机会，并维护财团网站(www.lysosomaldiseasenetwork.org)。《核心》 行政协调员将是整个网络中所有中央IRB活动的负责人，并承担 负责临床试验网站的帖子。核心也是LDN附属机构的组织实体 患者权益倡导团体和其他主要利益相关者，包括研究参与者。 对网络的财务监督由核心管理，包括对研究结果和 目标。

The Lysosomal Disease Network Administrative Core will function as the central unit of the consortium, providing the organizational and functional structure that will keep the consortia moving toward achieving the research goals stated in this application. The Core will be the point of contact for the External Advisory Committee, manage announcements related to Pilot/Feasibility projects and Career Enhancement opportunities, and maintain the consortium website (www.lysosomaldiseasenetwork.org). The Core Administrative Coordinator will be the point person for all central IRB activities across the network and assume responsibility for clinicaltrials.gov postings. The Core also serves as the organizing entity for the LDN affiliated Patient Advocacy Groups and other primary stakeholders, including study participants. Financial oversight of the network is managed by the Core, including routine review of study outcomes and goals.