Selecting, Packaging, and Granting Access for Sharing Study Data

Abstract

Data in medical studies and research projects are captured, curated and analyzed, often, with a substantial personal and financial effort. Such study data are typically managed by institutions and groups who are involved in these studies and projects. Often, they are refrained by these institutions and, thus, not shared with other scientists who are interested in similar medical topics or hypotheses. Open the data for other scientists will speed up medical insights, enable analyzes which currently lacks data amount either by enlarge the set size of study objects and by finding suitable controls, and allow to validate published results taking data from other studies into account. In this paper, we introduce the data sharing approach we use at the LIFE Research Center for Civilization Diseases, University Leipzig. Our approach is influenced by the OAIS reference model for archiving and distributing data to a designated community. We highlight several aspects of this approach, sketch the process and describe the supporting IT infrastructure. In particular, we outline the LIFE Data Portal and the LIFE Proposal Manager allowing to find, access, and reuse metadata and study data for dedicated analysis projects.