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. 2018 Jan 25;16(1):16.
doi: 10.1186/s12967-018-1390-1.

Toolbox for Research, or how to facilitate a central data management in small-scale research projects

Martin Bialke  1 , Henriette Rau  2 , Oliver C Thamm  3 , Ronny Schuldt  2 , Peter Penndorf  2 , Arne Blumentritt  2 , Robert Gött  2 , Jens Piegsa  2 , Thomas Bahls  2 , Wolfgang Hoffmann  2
Affiliations

Toolbox for Research, or how to facilitate a central data management in small-scale research projects

Martin Bialke et al. J Transl Med. .

Abstract

Background: In most research projects budget, staff and IT infrastructures are limiting resources. Especially for small-scale registries and cohort studies professional IT support and commercial electronic data capture systems are too expensive. Consequently, these projects use simple local approaches (e.g. Excel) for data capture instead of a central data management including web-based data capture and proper research databases. This leads to manual processes to merge, analyze and, if possible, pseudonymize research data of different study sites.

Results: To support multi-site data capture, storage and analyses in small-scall research projects, corresponding requirements were analyzed within the MOSAIC project. Based on the identified requirements, the Toolbox for Research was developed as a flexible software solution for various research scenarios. Additionally, the Toolbox facilitates data integration of research data as well as metadata by performing necessary procedures automatically. Also, Toolbox modules allow the integration of device data. Moreover, separation of personally identifiable information and medical data by using only pseudonyms for storing medical data ensures the compliance to data protection regulations. This pseudonymized data can then be exported in SPSS format in order to enable scientists to prepare reports and analyses.

Conclusions: The Toolbox for Research was successfully piloted in the German Burn Registry in 2016 facilitating the documentation of 4350 burn cases at 54 study sites. The Toolbox for Research can be downloaded free of charge from the project website and automatically installed due to the use of Docker technology.

Keywords: Data dictionary; Data management; ECRF; Epidemiological research; Pseudonymization; Research repository.

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Figures

Fig. 1
Fig. 1
The functionalities of the modular Toolbox for Research can easily be extended with additional modules e.g. for quality assurance
Fig. 2
Fig. 2
The integrated pseudonymization service gPAS provides the necessary pseudonyms
Fig. 3
Fig. 3
Process chain of the Toolbox for Research
Fig. 4
Fig. 4
Architecture of the Toolbox for Research from a docker-container perspective
Fig. 5
Fig. 5
Comparison of manual and automated data management processes within the German Burn Registry in the years 2014 and 2017
Fig. 6
Fig. 6
Total number of study sites and variables of annual DGV-statistics and the German Burn Registry for the years 2011–2017
See this image and copyright information in PMC

References

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    1. The German National Cohort (Nationale Kohorte e.V.). The German National Cohort Website. 2014. http://www.nationale-kohorte.de. http://www.nationale-kohorte.de/content/Datenschutzkonzept_130314.pdf. Accessed 10 Feb 2015.
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