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Title:The Chronic Urticaria Registry (CURE) : rationale, methods, and initial implementation
Authors:Weller, Karsten (Author)
Giménez-Arnau, Ana M. (Author)
Grattan, Clive (Author)
Asero, Riccardo (Author)
Mathelier-Fusade, Pascale (Author)
Bizjak, Mojca (Author)
Hanna, Michael (Author)
Maurer, Marcus (Author)
Tipology:1.03 - Short Scientific Article
Organisation:Logo UKPBAG - University Clinic of Respiratory and Allergic Diseases Golnik
Abstract:Background: Chronic urticaria (CU) is a common disease, characterized by the recurrent appearance of wheals, angioedema, or both for more than 6 weeks. Its underlying biology is not well understood, and many patients do not obtain sufficient relief from recommended treatments. Patient registries are rapidly growing as a form of research, because they can provide powerful, data-driven insights about the epidemiology of diseases, real-world effectiveness of treatments, rare patient types, safety monitoring, healthcare costs, and opportunities for quality improvement of healthcare delivery. Objectives: The Chronic Urticaria Registry (CURE) has been designed to improve the scientific understanding, clinical treatment, and healthcare planning of chronic urticaria patients. This report describes the rationale, methods, and initial implementation of this registry. Methods: CURE is an ongoing, prospective, international, multicenter, observational, voluntary registry of patients with CU. Participation in CURE is open to any physician treating CU patients, regardless of location, medical specialty, or type of practice setting. CURE aims to collect data on all CU patients, with no intentional selection or exclusion criteria. It collects baseline and follow-up data on the patient's demographics, history, symptoms, trigger and risk factors, therapies, and healthcare utilization. Results: CURE is a landmark achievement of the global urticaria medical community. As of 26 February 2020, 39 centers around the world have joined the registry and 35 have entered baseline data on a total of 2946 patients. Publications of this data will be forthcoming soon. Conclusions: CURE is eagerly seeking the participation of more physicians and the support of more governmental, charitable, and commercial sponsors from around the world. Here, in this paper, we invite other physicians to join this unique project to improve the lives of patients with CU.
Keywords:urticaria, registries
Year of publishing:2020
Publisher:John Wiley & Sons
COBISS_ID:29914115 Link is opened in a new window
ISSN on article:1468-3083
OceCobissID:23368965 Link is opened in a new window
DOI:10.1111/jdv.16947 Link is opened in a new window
Note:Nasl. z nasl. zaslona; Opis vira z dne 25. 9. 2020; Soavtorica iz Slovenije: Mojca Bizjak;
Files:URL URL - Presentation file, visit
.pdf PDF - Presentation file, download (252,21 KB)
Journal:Journal of the European Academy of Dermatology and Venereology
John Wiley & Sons
Rights:© 2020 The Authors.
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License:CC BY-NC-ND 4.0, Creative Commons Attribution Non-Commercial No Derivatives 4.0 International
Description:The most restrictive Creative Commons license. This only allows people to download and share the work for no commercial gain and for no other purposes.
Licensing start date:18.09.2020