Administrative and Outreach Core

行政和外展核心

• 批准号: 10472038
• 负责人: Joaquin M. Espinosa
• 金额: $ 78.45万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-26 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10472038
• 关键词: Advisory Committees; Advocacy; Advocate; Affect; Archives; Automobile Driving; Clinic; Collaborations; Colorado; Communication; Communities; Data; Data Analyses; Data Coordinating Center; Development; Down Syndrome; Education; Educational workshop; Ensure; Event; Feedback; General Population; Goals; Government; Government Officials; Human Resources; Investigation; Laboratories; Leadership; Mission; Modeling; Pediatric Hospitals; Persons; Philadelphia; Physicians; Policies; Population; Procedures; Progress Reports; Registries; Research Personnel; Resources; Scientist; Site; Societies; Source; System; Training and Education; United States National Institutes of Health; Universities; advocacy organizations; clinical practice; comorbidity; data access; data ecosystem; data management; data portal; data sharing; design; evidence base; meetings; online tutorial; operation; outreach; performance site; recruit; success; tool; usability

PROJECT SUMMARY – Administrative and Outreach Core. The key objective of the Administrative and Outreach Core (AOC) of the INCLUDE Data Coordinating Center (DCC) is to provide the integrated leadership, management, and administrative system required to fulfill the Center’s mission of serving all people with Down syndrome (DS) by accelerating a vast range of investigations into mechanisms driving and modulating comorbidities in this population. The AOC will guide and coordinate the activities of the Data Management Core (DMC) and the Data Portal Core (DPC) to ensure that they meet their objective of creating a world class resource for broad data sharing, access, and analysis. Within the AOC, a Project Management Team (PMT) will be assembled with key personnel from three major performance sites: the Linda Crnic for Down Syndrome at the University of Colorado, the Center for Data Driven Discovery at Children’s Hospital of Philadelphia, and Sage Bionetworks in Seattle. Using management and administrative strategies successfully employed in more than a dozen multi-site DCCs, the PMT will ensure collaborative, synergistic, and mission-aligned action across all DCC teams. The PMT will also ensure that all activities across the DCC are highly attuned to the needs of the community of stakeholders to be served by the INCLUDE Data Portal, which will be achieved through an open collaboration model promoting both transparency in the DCC operations and critical feedback from stakeholders. A key goal of the AOC is to ensure that the INCLUDE Data Portal empowers not only scientists, but also physicians, educators, government officials, advocates, and the general public with the data access and analysis tools required for evidence-based transformative action in the laboratory, the clinic, the classroom, the government, and society at large. While the primary objective is to accelerate discoveries on the mechanisms driving comorbidities in DS, the Data Portal could also have broader impacts on clinical practice, education, policy, and advocacy. Furthermore, it will be important to also engage communities focused on the study of DS comorbidities in the typical population. Therefore, within the AOC, the Outreach Team will implement a portfolio of outreach strategies to promote widespread use of the Data Portal and receive critical feedback from a diverse range of users to guide the evolutionary design of the Portal. Altogether, the AOC activities will advance the mission of the INCLUDE Project by enabling myriad investigations of the co-occurring conditions affecting those with trisomy 21, while also ensuring broader use of all data generated to advance training, education, and advocacy efforts.

项目摘要——行政和外展核心。 INCLUDE 数据协调中心行政和外展核心 (AOC) 的主要目标 （DCC）的目的是提供实现以下目标所需的综合领导、管理和行政系统： 中心的使命是通过加速广泛的调查来为所有唐氏综合症 (DS) 患者提供服务 研究驱动和调节该人群合并症的机制。 AOC将指导和协调 数据管理核心 (DMC) 和数据门户核心 (DPC) 的活动，以确保它们满足其要求 目标是创建用于广泛数据共享、访问和分析的世界级资源。 在 AOC 内，将组建一个项目管理团队 (PMT)，其关键人员来自三个主要领域 表演地点：科罗拉多大学唐氏综合症中心 Linda Crnic、数据驱动中心 费城儿童医院的 Discovery 和西雅图的 Sage Bionetworks。使用管理和 管理策略已在十多个多站点 DCC 中成功采用，PMT 将确保 所有 DCC 团队采取协作、协同和任务一致的行动。 PMT 还将确保所有 DCC 的活动高度适应利益相关者社区的需求 包括数据门户，这将通过开放协作模型来实现，从而促进透明度 DCC 运营以及利益相关者的重要反馈。 AOC 的一个关键目标是确保 INCLUDE 数据门户不仅为科学家提供支持，还为公众提供支持 医生、教育工作者、政府官员、倡导者和公众进行数据访问和分析 在实验室、诊所、课堂、学校等场所开展循证变革行动所需的工具 政府和整个社会。虽然主要目标是加速机制的发现 除了推动 DS 合并症之外，数据门户还可能对临床实践、教育、 政策、宣传。此外，让专注于 DS 研究的社区参与进来也很重要 典型人群的合并症。因此，在 AOC 内，外展团队将实施一个组合 的推广策略，以促进数据门户的广泛使用，并从不同的方面接收关键反馈 用户范围来指导门户的演进设计。 总而言之，AOC 活动将通过开展大量调查来推进 INCLUDE 项目的使命 影响 21 三体症患者的同时发生的病症，同时确保所有数据的更广泛使用 旨在推进培训、教育和宣传工作。