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Methods Inf Med 2016; 55(02): 193-199
DOI: 10.3414/ME15-01-0099
Original Articles
Schattauer GmbH

Registries in Clinical Epidemiology: the European Surveillance System on Contact Allergies (ESSCA)

W. Uter
1   Department of Medical Informatics, Biometry and Epidemiology, Friedrich-Alexander University Erlangen-Nürnberg, Erlangen, Germany
,
A. Schnuch
2   Information Network of Departments of Dermatology, Georg-August University of Göttingen, Göttingen, Germany
,
M. Wilkinson
3   Department of Dermatology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
,
A. Dugonik
4   Department of Dermatology, University Medical Centre Maribor, Maribor, Slovenia
,
B. Dugonik
5   Faculty of Electrical Engineering and Computer Science at the University of Maribor, University of Maribor, Maribor, Slovenia
,
T. Ganslandt
6   Medical Center for Information & Communication Technology, Erlangen University Hospital, Erlangen, Germany
› Institutsangaben
Weitere Informationen

Publikationsverlauf

received: 27. Juli 2015

accepted: 01. Februar 2016

Publikationsdatum:
08. Januar 2018 (online)

    Lizenzen und Reprints

Summary

Background: Disease registries rely on consistent electronic data capturing (EDC) pertinent to their objectives; either by using existing electronic data as far as available, or by implementing specific software solutions.

Objectives: To describe the current practice of an international disease registry (European Surveillance System on Contact Allergies, ESSCA, www.essca-dc.org) against different state of the art approaches for EDC.

Methods: Since 2002, ESSCA is collecting data, currently from 53 departments in 12 countries. Departmental EDC software ranges from spreadsheets to comprehensive “patch test software” based on a relational database. In the Erlangen data centre, such diverse data is imported, converted to a common format, quality checked and pooled for scientific analyses.

Results: Feed-back to participating departments for quality control is provided by standardised reports. Varying author teams publish scientific analyses addressing the objective of contact allergy surveillance.

Conclusions: Although ESSCA represents a historically grown, heterogeneous network and not one unified approach to EDC, some of its features have contributed to its viability in the last 12 years and may be useful to consider for similar investigator-initiated networks.

Keywords

Registry - dermatitis - allergic contact dermatitis - epidemiologic surveillance
 

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