Administrative and Outreach Core

Children'S Hosp Of Philadelphia, Philadelphia PA

Investigators

Linked publications, trials & patents

Abstract

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 to accelerate discoveries that continuously improve and enrich the lives of people with Down syndrome (DS) through accessible data resources that enable interdisciplinary collaboration, connected communities, and the expansion of a global DS knowledge ecosystem. The AOC will guide and coordinate the activities of the Data Management Core (DMC) and the Data Hub Core (DHC) to ensure that they meet their objective of developing a world-class resource for broad data sharing, access, and analysis. Within the AOC, a Program Management Team (PMT) has been assembled with key personnel from all major performance sites: the Linda Crnic Institute for Down Syndrome at the University of Colorado, the Center for Data-Driven Discovery at Children’s Hospital of Philadelphia (CHOP), Vanderbilt University Medical Center (VUMC), Sainte-Justine Research Hospital in Toronto, and Velsera. Using management and administrative strategies successfully employed to create and develop the current iteration of the DCC and its Data Hub, 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 Hub, 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 Hub 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 co- occurring conditions in DS, the Data Hub can also have broader impacts on clinical practice, education, policy, and advocacy. Furthermore, it is also critical to engage communities focused on the study of these co-occurring conditions in the general population. Therefore, within the AOC, the Outreach Team has already implemented and will continue to develop a portfolio of outreach, education, and training activities to promote widespread use of the Data Hub and receive critical feedback from a diverse range of users to guide its evolutionary design. 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.