Robert Ofenloch1, Christian Apfelbacher2, Elke Weisshaar3. 1. Abteilung Klinische Sozialmedizin, Universitätsklinikum Heidelberg, Voßstr. 2, 69115, Heidelberg, Deutschland. Robert.Ofenloch@med.uni-heidelberg.de. 2. Medizinische Soziologie, Institut für Epidemiologie und Präventivmedizin, Universität Regensburg, Regensburg, Deutschland. 3. Abteilung Klinische Sozialmedizin, Universitätsklinikum Heidelberg, Voßstr. 2, 69115, Heidelberg, Deutschland.
Abstract
BACKGROUND: Population-based studies on hand eczema (HE) show a 1-year prevalence up to 10.0% of which 5-7% are severe chronic HE (CHE) which can severely impair the life of those affected. Registry data can help to investigate and optimize burden of disease as well as healthcare of HE in a real-life setting. OBJECTIVES: To assess how data from registries have been used in studies concerning HE. What is the benefit of registry data and which limitations occur when researchers use registry data in their studies? MATERIALS AND METHODS: This is a review of publications where registry data were used in studies concerning HE. Most of the publications included in this review are from Germany, but some studies are from other countries like Denmark and Switzerland. RESULTS: Currently, only Germany and Switzerland have established a disease-specific registry for CHE. The chronic hand eczema registry with the acronym CARPE assesses the characteristics of CHE as well as treatment and course of the diseases in a real-life setting. In Denmark, data from public registries (Danish National Board of Industrial Injuries Registry) were used to identify patients with occupational HE in order interview them using a questionnaire. In Saarland and north Bavaria, registries for occupational skin diseases were established in the 1990s, and more than 90% of the patients registered in these had HE. CONCLUSION: Diseases registries for HE can generate considerable data to describe characteristics of HE patients in a dermatological setting as well as the treatments prescribed. The completeness of data can be assessed in disease registries, while this is not possible when using public registry data.
BACKGROUND: Population-based studies on hand eczema (HE) show a 1-year prevalence up to 10.0% of which 5-7% are severe chronic HE (CHE) which can severely impair the life of those affected. Registry data can help to investigate and optimize burden of disease as well as healthcare of HE in a real-life setting. OBJECTIVES: To assess how data from registries have been used in studies concerning HE. What is the benefit of registry data and which limitations occur when researchers use registry data in their studies? MATERIALS AND METHODS: This is a review of publications where registry data were used in studies concerning HE. Most of the publications included in this review are from Germany, but some studies are from other countries like Denmark and Switzerland. RESULTS: Currently, only Germany and Switzerland have established a disease-specific registry for CHE. The chronic hand eczema registry with the acronym CARPE assesses the characteristics of CHE as well as treatment and course of the diseases in a real-life setting. In Denmark, data from public registries (Danish National Board of Industrial Injuries Registry) were used to identify patients with occupational HE in order interview them using a questionnaire. In Saarland and north Bavaria, registries for occupational skin diseases were established in the 1990s, and more than 90% of the patients registered in these had HE. CONCLUSION: Diseases registries for HE can generate considerable data to describe characteristics of HE patients in a dermatological setting as well as the treatments prescribed. The completeness of data can be assessed in disease registries, while this is not possible when using public registry data.
Entities:
Keywords:
CARPE; Disease burden; Health service research; Healthcare situation; Routine care
Authors: Christian Apfelbacher; Sonja Molin; Elke Weisshaar; Andrea Bauer; Peter Elsner; Vera Mahler; Melanie Weiss; Thomas Ruzicka; Thomas L Diepgen Journal: Acta Derm Venereol Date: 2014-03 Impact factor: 4.437
Authors: Christian Joachim Apfelbacher; Wilhelm Akst; Sonja Molin; Jochen Schmitt; Andrea Bauer; Elke Weisshaar; Vera Mahler; Sabine Treichel; Thomas Ruzicka; Thomas Luger; Peter Elsner; Thomas Ludwig Diepgen Journal: J Dtsch Dermatol Ges Date: 2011-05-12 Impact factor: 5.584
Authors: Robert F Ofenloch; Thomas L Diepgen; Elke Weisshaar; Peter Elsner; Christian J Apfelbacher Journal: Acta Derm Venereol Date: 2014-11 Impact factor: 4.437
Authors: Phyllis I Spuls; Louise A A Gerbens; Christian J Apfelbacher; Dmitri Wall; Bernd W M Arents; Sebastien Barbarot; Amanda Roberts; Mette Deleuran; Maritza A Middelkamp-Hup; Christian Vestergaard; Stephan Weidinger; Jochen Schmitt; Alan D Irvine; Carsten Flohr Journal: J Invest Dermatol Date: 2017-05-27 Impact factor: 8.551
Authors: L Eissing; S J Rustenbach; M Krensel; N Zander; C Spehr; M A Radtke; L Naldi; M Augustin Journal: J Eur Acad Dermatol Venereol Date: 2016-05-02 Impact factor: 6.166
Authors: Thomas L Diepgen; Tove Agner; Werner Aberer; John Berth-Jones; Frédéric Cambazard; Peter Elsner; John McFadden; Pieter Jan Coenraads Journal: Contact Dermatitis Date: 2007-10 Impact factor: 6.600