NICHD DATA ECOSYSTEM DEVELOPMENT ROADMAP - DASH

Eunice Kennedy Shriver National Institute Of Child Health & Human Development

Investigators

Abstract

A key goal for the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Office of Data Science and Sharing (ODSS) is to develop a diverse, secure, and interoperable research data ecosystem to advance scientific discovery in support of NICHD’s mission to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all. As part of this ecosystem, NICHD ODSS also looks to provide best practices for data collection, standards, management, sharing, and use across the research and funding lifecycles for their researchers. Currently NICHD has a substantial number of resources (100+) that house both the research data and tools to use and analyze the data sets, with the NICHD Data and Specimen Hub (DASH) providing the main Catalog for all of these NICHD studies. While DASH currently provides a centralized catalog, the NICHD Office of Data Science and Sharing is looking to develop a federated, secure research and specimen data ecosystem that will measurably and rapidly facilitate data and specimen sharing by NICHD-funded researchers and increase access to shared data and specimens for the entire research community. Massachusetts Institute of Technology Lincoln Laboratory (MIT LL) will support the NICHD ODSS in this effort primarily focusing on providing recommendations for the development of a human-centered data and biospecimen ecosystem that is focused on responsibly enabling future research and innovation to advance the NICHD mission. MIT Lincoln Laboratory is a Federally Funded Research and Development Center (FFRDC) on a no-profit-no-fee basis by MIT under Air Force Prime Contract FA8702-15-D-0001. The period of performance for the Prime Contract is 28 April 2015 through 31 March 2020, with an option period from 1 April 2020 through 31 March 2025. Orders placed on the MIT LL contract by 31 March 2025 may extend up to, but not beyond, 28 February 2030. As an FFRDC, MIT LL is required to work cooperatively and non-competitively with industry and other sponsor-directed entities. For this effort, MIT LL will work as directed with other performers and government stakeholders. As an FFRDC, MIT LL must maintain objectivity, and work on the government’s behalf to achieve open-architected and scalable capabilities that can transition to operational use. NIH can leverage royalty-free non-exclusive U.S. Government usage rights to all work performed on this project, and can modify the tasks and period of performance in a statement of work at any time in consultation with MIT LL.