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

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 biomedic...

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Publicado en:Studies in Health Technology & Informatics Vol. 267; pp. 254 - 262
Autores principales: SCHEEL, Heiko, DATHE, Henning, FRANKE, Thomas, SCHARFE, Tabea, ROTTMANN, Thorsten
Formato: pictorial research tables/charts Journal Article
Publicado: Sage Publications Inc. 2019
Acceso en línea:Ver este registro en EBSCOhost
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      dt: 2019
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      pub: Sage Publications Inc.
      place: Thousand Oaks, California
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        atl: A Privacy Preserving Approach to Feasibility Analyses on Distributed Data Sources in Biomedical Research.
      aug:
        au:
          SCHEEL, Heiko
          DATHE, Henning
          FRANKE, Thomas
          SCHARFE, Tabea
          ROTTMANN, Thorsten
        affil: Department of Medical Informatics, University Medical Center Göttingen
      sug:
        subj:
          Research, Medical
          Data Management
          Data Security
          Software Design
          Human
          Information Retrieval
          Data Mining
          Data Analytics
          Graphical User Interface
          Consent
          Funding Source
      ab: 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.
      pubtype: Academic Journal
      doctype:
        pictorial
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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