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Technical solution for data collection, data safety and data privacy legislation: experiences from the SWEET study
Author(s) -
Forsander Gun,
Pellinat Martin,
Volk Michael,
Muller Markus,
Pinelli Leonardo,
Magnen Agnes,
Danne Thomas,
Aschemeier Bärbel,
Beaufort Carine
Publication year - 2012
Publication title -
pediatric diabetes
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.678
H-Index - 75
eISSN - 1399-5448
pISSN - 1399-543X
DOI - 10.1111/j.1399-5448.2012.00911.x
Subject(s) - legislation , data collection , medicine , data protection act 1998 , internet privacy , information privacy , data science , computer security , computer science , law , political science , statistics , mathematics
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.