A Privacy Preserving Approach to Feasibility Analyses on Distributed Data Sources in Biomedical Research.

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ID: 36159
2019
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Ranked #56 of 170 articles by views in Studies in health technology and informatics

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Abstract
Funding agencies and field experts promote reuse of scientific data and biomaterial beyond the scope of the original project. The availability of research data, however, is limited by the interest of original authors as well as the privacy rights of the study participants, especially in the biomedical sciences. On the other hand, for an available data set to be a useful contribution to the scientific community, it has to be findable and accessible with reasonable effort. Therefore, using the R Shiny library, we designed and implemented a software for data discovery and feasibility analyses with compliance to regulatory and contractual regulations. Due to its genericity, it was successfully tested with heterogeneous data sets and ultimately applied to the data and biomaterial of the German Center for Cardiovascular Research (DZHK). The resulting tool - named the Feasibility Explorer - is publicly available and can be used by researchers to get an overview of data and biomaterial available in the DZHK and to select collectives in the process of submitting a usage application. To implement the rights of participants and original authors, data is integrated by querying the informed consent and not persistently stored. All calculations on the data are performed server-sided and only aggregated information is send to a client, whereas the extent of information was strictly limited to a necessary minimum that allows an applicant to assess whether an application is worthwhile.
Reference Key
scheel2019astudies Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors Scheel, Heiko;Dathe, Henning;Franke, Thomas;Scharfe, Tabea;Rottmann, Thorsten;
Journal Studies in health technology and informatics
Year 2019
DOI
10.3233/SHTI190835
URL
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