Ofenloch Robert, Apfelbacher Christian, Weisshaar Elke
Abteilung Klinische Sozialmedizin, Universitätsklinikum Heidelberg, Voßstr. 2, 69115, Heidelberg, Deutschland.
Medizinische Soziologie, Institut für Epidemiologie und Präventivmedizin, Universität Regensburg, Regensburg, Deutschland.
Hautarzt. 2018 Oct;69(10):809-814. doi: 10.1007/s00105-018-4245-z.
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.
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?
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.
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.
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.
基于人群的手部湿疹（HE）研究显示，1年患病率高达10.0%，其中5-7%为重度慢性手部湿疹（CHE），这会严重影响患者的生活。登记数据有助于在现实环境中调查和优化疾病负担以及手部湿疹的医疗保健情况。
评估登记数据在手部湿疹相关研究中的使用方式。登记数据有哪些益处，研究人员在研究中使用登记数据时会出现哪些局限性？
这是一篇对在手部湿疹相关研究中使用登记数据的出版物的综述。本综述纳入的大多数出版物来自德国，但也有一些研究来自丹麦和瑞士等其他国家。
目前，只有德国和瑞士建立了针对慢性手部湿疹的疾病特异性登记系统。首字母缩写为CARPE的慢性手部湿疹登记系统在现实环境中评估慢性手部湿疹的特征以及疾病的治疗和病程。在丹麦，利用公共登记系统（丹麦国家工伤登记局）的数据识别职业性手部湿疹患者，以便通过问卷调查对他们进行访谈。在萨尔州和巴伐利亚北部，20世纪90年代建立了职业性皮肤病登记系统，登记的患者中90%以上患有手部湿疹。
手部湿疹疾病登记系统可以生成大量数据，以描述皮肤病环境中手部湿疹患者的特征以及所开的治疗方法。疾病登记系统可以评估数据的完整性，而使用公共登记系统数据时则无法做到这一点。
