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Linkage of Data from Diverse Data Sources (LDS): A Data Combination Model Provides Clinical Data of Corresponding Specimens in Biobanking Information System

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Abstract

To provide sufficient clinical data for corresponding specimens from diverse databases established before the implementation of biobanks for research purposes with respect to data privacy regulations. For this purpose, we developed a data model called “linkage of data from diverse data sources (LDS)”. The data model was developed to merge clinical data from an existing local database with biospecimen repository data in our serum bank for uro-oncology. This concept combines two data models based on XML: the first stores information required to connect multiple data sources and retrieve clinical data, and the second provides a data architecture to acquire clinical and repository data. All data were anonymized and encrypted using the Advanced Encryption Standard. X.509 certificates were applied to secure data access. Furthermore, we tested the feasibility of implementing these models in the information management system for biobanking. The data concept can provide clinical and repository data of biospecimens. Only authorized receivers can access these data. Sensitive and personal data are not accessible by the data receivers. The data receiver cannot backtrack to the individual donor using the data model. The acquired data can be converted into a text file format supported by familiar statistical software. Supplementary tools were implemented to generate and view XML documents based on these data models. This data model provides an effective approach to distribute clinical and repository data from different data sources to enable data analysis compliant with data privacy regulations.

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Acknowledgments

Special thanks duo to Christiane Ptok for project management.

Conflict of interest

All authors disclose any financial and personal relationships with other people or organizations that could inappropriately influence (bias) their work.

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Authors and Affiliations

  1. Department of Urology, University Hospital Cologne, Kerpener Street 62, 50937, Cologne, Germany

    Okyaz Eminaga, Enver Özgür, Jan Herden, Ilgar Akbarov, Ali Tok, Udo Engelmann & Sebastian Wille

  2. Department of Urology, University Hospital Muenster, Albert-Schweitzer-Str. 33, 48149, Muenster, Germany

    Axel Semjonow

  3. Department of Urology/Prostate Center, University Hospital Cologne, Kerpener-Street 62, 50937, Cologne, Germany

    Okyaz Eminaga

Authors
  1. Okyaz Eminaga
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  2. Enver Özgür
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  3. Axel Semjonow
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  4. Jan Herden
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  5. Ilgar Akbarov
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  6. Ali Tok
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  7. Udo Engelmann
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  8. Sebastian Wille
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Corresponding author

Correspondence to Okyaz Eminaga.

Additional information

Authors’ contributions

(1) The conception and design of the study: O. Eminaga, A. Semjonow

(2) Acquisition of data: O. Eminaga, I. Akbarov, A. Tok, E. Özgür

(3) Analysis and interpretation of data: O. Eminaga, A. Semjonow

(4) Drafting the article: O. Eminaga

(5) Revising it critically for important intellectual content: S. Wille, J. Herden and U. Engelmann

(6) Final approval of the version to be submitted: All authors.

Summary table

What was already known on the topic?

• Diverse concepts were developed to combine clinical data and related specimen data in biobanking information system.

• Mostly clinical data were stored or imported into biobanking information systems.

• None of recent studies provided concepts to reuse preexisting diverse databases (data sources), and the combination of diverse data sources to generate data containers containing clinical and specimen data in an institution.

What this study added to our knowledge

• The LDS model enables reusing clinical data from preexisting databases.

• The combination of clinical data from diverse data sources can be realized.

• Clinical data can be related to corresponding specimen data without identifying the donor.

• LDS enables reusing the existing data infrastructure.

Electronic supplementary material

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Additional file 1

Database diagram of the data container in the Department of Urology of University Hospital Cologne (PDF 49 kb)

Additional file 2

Database diagram of the data container in the Department of Urology of University Hospital Münster (PDF 59 kb)

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Eminaga, O., Özgür, E., Semjonow, A. et al. Linkage of Data from Diverse Data Sources (LDS): A Data Combination Model Provides Clinical Data of Corresponding Specimens in Biobanking Information System. J Med Syst 37, 9975 (2013). https://doi.org/10.1007/s10916-013-9975-y

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