Collaborative Model of Data Sharing among Major Research Entities: Lessons from RCMI Translational Research Network (RTRN) and Jackson Heart Study (JHS)

Despite a number of practical, cultural and scientific reasons, the sharing of scientific data generated from public funding is inescapable. Although various data-sharing models exist, it may be new to share research data through a network of scientists/investigators. This report describes the practices of sharing the Jackson Heart Study (JHS) data through RTRN Data and Technology Coordinating Center (DTCC) under the mechanism of a JHS Vanguard Center (JHSVC). The JHS is the largest single-site cohort study to prospectively investigate the determinants of cardiovascular diseases (CVD) among African-Americans. The current approach for JHS data-sharing is to grant access only to approved applicants. The RTRN JHSVC which is managed through the DTCC is unique from the first five JHSVCs in that data access is opened to a network of researchers of 19 minority institutions in the USA. The experienced DTCC personnel have initiated a number of approaches designed to shorten the learning curve to effectively utilize the JHS data. The DTCC role is to help RTRN researchers create scientific outputs through customized-services such as preliminary analyses for feasibility, data-mining, data information workshops and idea sharing meetings, profiling potential investigators, providing data information and query tool through website, helping in data analysis and manuscript development for publication. The expected outcomes of DTCC-customized services include enhancing accessibility of JHS data and its utility to RTRN researchers; and achieving the principal goal of JHSVC by enhancing scientific productivity.