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Technical solution for data collection, data safety and data privacy legislation: experiences from the SWEET study

Authors


Corresponding author:

Gun Forsander,

The Queen Silvia Children's Hospital,

Sahlgrenska University Hospital,

SE-416 85 Gothenburg,

Sweden.

Tel: +46 31 3438247;

fax: +46 31 215291;

e-mail: gun.forsander@vgregion.se

Abstract

Background

One of the most important tasks of the SWEET study is benchmarking the data collected. Information on the occurrence of the disease of diabetes, the treatment, and their outcomes in children from the different member states of European Union (EU) is crucial. How the collection of data is realized is essential, concerning both the technical issues and the results. The creation of SWEET Centers of Reference (CoR), all over Europe will be facilitated by the access to safe data collection, where legal aspects and privacy are ascertained.

Objective

To describe the rationale for- and the technical procedure in the data collection implementation, in the SWEET study.

Subjects

Selected data on all patients treated at SWEET CoR are collected.

Methods

The SWEET project data collection and management system, consists of modular components for data collection, online data interchange, and a database for statistical analysis.

Conclusion

The SWEET study and the organization of CoR aims for the goal of offering an updated, secure, and continuous evaluation of diabetes treatment regimens for all children with diabetes in Europe. To support this goal, an appropriate and secure data management system as described in this paper has been created.

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