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

W. Uter; A. Schnuch; M. Wilkinson; A. Dugonik; B. Dugonik; T. Ganslandt

doi:10.3414/ME15-01-0099

Methods of Information in Medicine, Inhaltsverzeichnis

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

¹Department of Medical Informatics, Biometry and Epidemiology, Friedrich-Alexander University Erlangen-Nürnberg, Erlangen, Germany

,

A. Schnuch

²Information Network of Departments of Dermatology, Georg-August University of Göttingen, Göttingen, Germany

,

M. Wilkinson

³Department of Dermatology, Leeds Teaching Hospitals NHS Trust, Leeds, UK

,

A. Dugonik

⁴Department of Dermatology, University Medical Centre Maribor, Maribor, Slovenia

,

B. Dugonik

⁵Faculty of Electrical Engineering and Computer Science at the University of Maribor, University of Maribor, Maribor, Slovenia

,

T. Ganslandt

⁶Medical Center for Information & Communication Technology, Erlangen University Hospital, Erlangen, Germany

› Institutsangaben

Abstract

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

Volltext

Referenzen

References
1 Prokosch HU, Ganslandt T. Perspectives for medical informatics. Reusing the electronic medical record for clinical research. Methods Inf Med 2009; 48: 38-44.
2 Schnuch A, Geier J, Lessmann H, Arnold R, Uter W. Surveillance of contact allergies: methods and results of the Information Network of Departments of Dermatology (IVDK). Allergy 2012; 67: 847-857.
3 Johansen JD, Aalto-Korte K, Agner T, Andersen KE, Bircher A, Bruze M. et al. European Society of Contact Dermatitis guideline for diagnostic patch testing – Recommendations on best practice. Contact Dermatitis 2015; 73: 195-221.
4 Shah J, Rajgor D, Pradhan S, McCready M, Zaveri A, Pietrobon R. Electronic data capture for registries and clinical trials in orthopaedic surgery: open source versus commercial systems. Clin Orthop Relat Res 2010; 468: 2664-2671.
5 Klein A, Prokosch H-U, Müller M, Ganslandt T. Experiences with an interoperable data acquisition platform for multi-centric research networks based on HL7 CDA. Methods Inf Med 2007; 46: 580-585.
6 Berlage S, Grüßner S, Lack N, Franz HBG. GerOSS (German Obstetric Surveillance System). A Project to Improve the Treatment of Obstetric Rare Diseases and Complications Using a Web Based Documentation and Information Platform. Methods Inf Med 2015; 54: 406-411.
7 Diepgen TL, Stüben O. ALLDAT: an allergy data system for storage and analysis of test data with regard to epidemiological and occupational dermatology. Semin Dermatol 1989; 8: 101-102.
8 Uter W, Diepgen TL, Arnold R, Hillebrand O, Pietrzyk P, Stüben O, Schnuch A. The Informational Network of Departments of Dermatology in Germany – a Multicenter Project for Computer-assisted Monitoring of Contact Allergy. Electronic Data Processing Aspects Derm Beruf Umwelt 1992; 40: 142-149 (published erratum: p 197).
9 Natter MD, Quan J, Ortiz DM, Bousvaros A, Ilowite NT, Inman CJ. et al. An i2b2-based, generalizable, open source, self-scaling chronic disease registry. J Am Med Inform Assoc 2013; 20: 172-179.
10 Prokosch H-U, Ries M, Beyer A, Schwenk M, Seggewies C, Köpcke F. et al. IT infrastructure components to support clinical care and translational research projects in a comprehensive cancer center. Stud Health Technol Inform 2011; 169: 892-896.
11 Ries M, Prokosch H-U, Beckmann MW, Bürkle T. Single-source tumor documentation – reusing oncology data for different purposes. Onkologie 2013; 36: 136-141.
12 Krumm R, Semjonow A, Tio J, Duhme H, Bürkle T, Haier J. et al. The need for harmonized structured documentation and chances of secondary use – results of a systematic analysis with automated form comparison for prostate and breast cancer. J Biomed Inform 2014; 51: 86-99.
13 Uter W, Johansen J D, Orton D I, Frosch P J, Schnuch A. Clinical update on contact allergy. Curr Opin Allergy Clin Immunol 2005; 5: 429-436.
14 Schnuch A, Uter W, Geier J, Gefeller O. Epidemiology of contact allergy: an estimation of morbidity employing the clinical epidemiology and drug-utilization research (CE-DUR) approach. Contact Dermatitis 2002; 47: 32-39.
15 Uter W, Ludwig A, Balda B-R, Schnuch A, Pfahlberg A, Schäfer T. et al. The prevalence of contact allergy differed between population-based and clinic-based data. J Clin Epidemiol 2004; 57: 627-632.
16 Uter W, Gefeller O, Giménez-Arnau A, Frosch P, Johansen JD, Schuttelaar M-L. et al. Characteristics of patients patch tested in the ESSCA Network, 2009–2012. Contact Dermatitis 2015; 73: 82-90.
17 Uter W, Schnuch A, Gefeller O. Guidelines for the descriptive presentation and statistical analysis of contact allergy data. Contact Dermatitis 2004; 51: 47-56.
18 Uter W, Schnuch A, Giménez-Arnau A, Orton D, Statham B. Databases and Networks. The Benefit of Research and Quality Assurance in Patch Testing. In: Johansen J, Frosch P, Lepoittevin J-P. editors. Contact Dermatitis. 5th edition. Springer; 2011. pp 1053-1064.
19 Uter W, Arnold R, Wilkinson J, Shaw S, Perrenoud D, Rili C. et al. A multilingual European patch test software concept: WinAlldat/ESSCA. Contact Dermatitis 2003; 49: 270-271.
20 Garg S, Thyssen JP, Uter W, Schnuch A, Johansen JD, Menné T. et al. Nickel allergy following European Union regulation in Denmark, Germany, Italy and the UK. Br J Dermatol 2013; 169: 854-858.
21 Belloni Fortina A, Cooper SM, Spiewak R, Fontana E, Schnuch A, Uter W. Patch test results in children and adolescents across Europe Analysis of the ESSCA Network, 2002–2010. Pediatr Allergy Immunol. 2015 doi: 10.1111/pai.12397. [Epub ahead of print].
22 Pesonen M, Jolanki R, Larese Filon F, Wilkinson M, Kręcisz B, Kieć-Świerczyńska M. et al. Patch test results of the European baseline series among patients with occupational contact dermatitis across Europe – analyses of the European Surveil-lance System on Contact Allergy network, 2002–2010. Contact Dermatitis 2015; 72: 154-163.
23 Uter W, Hillen U, Geier J. Is incident sensitization to p-phenylenediamine related to particular exposure patterns? Results of a questionnaire study. Contact Dermatitis 2007; 56: 266-270.
24 Faldum A, Pommerening K. An optimal code for patient identifiers. Comput Methods Programs Biomed 2005; 79: 81-88.
25 Lablans M, Borg A, Ückert F. A RESTful interface to pseudonymization services in modern web applications. BMC Med Inform Decis Mak 2015; 15: 2.
26 Bialke M, Bahls T, Havemann C, Piegsa J, Weitmann K, Wegner T, Hoffmann W. MOSAIC. A modular approach to data management in epidemiological studies. Methods Inf Med 2015; 54 (Suppl. 04) 364-371.
27 Ngouongo SMN, Löbe M, Stausberg J. The ISO/ IEC 11179 norm for metadata registries: does it cover healthcare standards in empirical research?. J Biomed Inform 2013; 46: 318-327.
28 Dugas M, Jöckel K-H, Friede T, Gefeller O, Kieser M, Marschollek M. et al. Memorandum “Open Metadata”. Open Access to Documentation Forms and Item Catalogs in Healthcare. Methods Inf Med 2015; 54 (Suppl. 04) 376-378.
29 Lundov MD, Opstrup MS, Johansen JD. Methylisothiazolinone contact allergy – growing epidemic. Contact Dermatitis 2013; 69: 271-275.
30 Uter W, Geier J, Bauer A, Schnuch A. Risk factors associated with methylisothiazolinone contact sensitization. Contact Dermatitis 2013; 69: 231-238.
31 Aerts O, Baeck M, Constandt L, Dezfoulian B, Jacobs M-C, Kerre S. et al. The dramatic increase in the rate of methylisothiazolinone contact allergy in Belgium: a multicentre study. Contact Dermatitis 2014; 71: 41-48.