Data Management Core

Children'S Hosp Of Philadelphia, Philadelphia PA

Investigators

Linked publications, trials & patents

Abstract

PROJECT SUMMARY – Data Management Core The key objective of the Data Management Core (DMC) of the INCLUDE Data Coordinating Center (DCC) is to support the INCLUDE Project’s mission of studying Down syndrome and its co-occurring conditions by developing sustainable and innovative frameworks for data sharing, management, and curation in accordance with FAIR (Findable, Accessible, Interoperable, Reusable) data principles. We propose to build on the successes in the initial grant period by implementing open-source tools and best practices to optimize our data workflow, expanding the diversity and volume of data we can efficiently process, and collaborating with researchers to identify their needs and create new data products that meet those needs. We will achieve these goals through four Specific Aims: 1) Collaborate with the Down syndrome research community to iterate and improve data sharing practices in areas such as metadata, phenotypic annotations, and secondary analyses and derived data; 2) Modernize our infrastructure for processing and sharing data in a secure and compliant environment, efficiently ingesting and validating large amounts of data from numerous sources, storing and processing this data for multiple endpoints, and providing dashboards to increase visibility into our data processes; 3) Expand support for new data modalities (including imaging, electronic health record data, and other research data types) and improve the usability of data products through enhanced metadata annotation and search capabilities; and 4) Foster connections with INCLUDE Project initiatives (DS-Connect® and the new Down Syndrome Cohort Development Program, Clinical Cohort Coordinating Center, and DS- Biorepository) to maximize research utility and drive innovation. The DMC team has deep experience with large-scale data representation and curation in NIH-funded cloud projects, and domain expertise in Down syndrome phenotypic and ‘omics data. We will work on the above goals in close collaboration with the Administrative and Outreach and Data Hub Cores of the DCC, as well as with Down syndrome researchers and colleagues at the NIH. As the volume and complexity of data from INCLUDE- funded projects continue to grow, the DMC’s work will ensure that robust data management practices and scalable tools are in place to share this data and maximize the utility of the Data Hub to the Down syndrome and broader research communities.