Lysosomal Disease Network Administrative Core

溶酶体疾病网络管理核心

• 批准号: 10018658
• 负责人: Chester B. Whitley
• 金额: $ 26.41万
• 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 2025-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10018658
• 关键词: Advisory Committees; Advocacy; Affect; Age of Onset; Attenuated; Biochemical; Birth; Characteristics; Clinical; Communication; Defect; Disease; Early Diagnosis; Ensure; Enzymes; Fellowship; Frequencies; Gene Mutation; Genes; Genotype; Glycoproteins; Glycosaminoglycans; Goals; Human Resources; Incidence; Individual; Inheritance Patterns; Inherited; Institutional Review Boards; Life; Link; Live Birth; Lysosomes; Metabolic; Mucopolysaccharidosis I; Mutation; Neurologic Dysfunctions; Newborn Infant; Occupational activity of managing finances; Office of Administrative Management; Online Systems; Outcome Study; Participant; Patient Recruitments; Persons; Pharmacotherapy; Phenotype; Pilot Projects; Principal Investigator; Protocols documentation; Research; Research Project Grants; Research Support; Scientist; Severities; Stem cell transplant; Structure; Symptoms; Techniques; Therapeutic; Work; career; data management; gene therapy; improved outcome; lipid metabolism; meetings; next generation; patient advocacy group; programs; success; web site

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.

溶酶体疾病网络管理核心将作为联合体的中心单位， 提供组织和职能结构，使财团朝着实现 本申请中所述的研究目标。核心将是外部咨询的联系点 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，并维护联合会网站（www.lysosomaldiseasenetwork.org）。核心 行政协调员将是整个网络中所有中心IRB活动的负责人，并承担 对clinicaltrials.gov发布的内容负责。该中心还作为LDN附属机构的组织实体 患者倡导团体和其他主要利益相关者，包括研究参与者。 网络的财务监督由核心管理，包括对研究结果的常规审查， 目标.