Administrative and Outreach Core

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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.