Administrative and Outreach Core

项目摘要--行政和外联核心。 包括数据协调中心行政和外联核心(AOC)的主要目标 (DCC)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快广泛的调查来服务所有唐氏综合症(DS)患者 在这个群体中驱动和调节共病的机制。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 为广泛的数据共享、访问和分析创建世界级资源的目标。 在AOC内部，将组建一个项目管理团队(PMT)，由来自三个主要部门的关键人员组成 表演网站：科罗拉多大学的Linda Crnic治疗唐氏综合症，数据驱动中心 在费城儿童医院和西雅图的Sage Bionetworks发现。使用管理和 管理策略在十多个多站点DCC中成功应用，PMT将确保 所有DCC团队的协作、协同和与任务一致的行动。PMT还将确保所有 整个发改委的活动与利益攸关方社区的需求高度协调，将由 包括数据门户，这将通过促进透明度的开放式协作模式来实现 在DCC业务和利益相关者的关键反馈中。 AOC的一个关键目标是确保Include Data门户不仅为科学家提供支持，还为 医生、教育工作者、政府官员、倡导者和普通公众对数据的访问和分析 实验室、诊所、教室、医院、医院和医院采取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对机制的发现 推动DS的并存，数据门户还可能对临床实践、教育、 政策和宣传。此外，重要的是让关注DS研究的社区参与进来 典型人群中的共病。因此，在AOC内，外联小组将实施一个项目组合 推广广泛使用数据门户的推广战略，并从不同的 指导门户的进化设计的用户范围。 总之，AOC的活动将推动Include项目的使命，使无数的调查成为可能 影响21三体患者的共生条件，同时也确保所有数据的更广泛使用 用于推进培训、教育和宣传工作。

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.