ǂThe ǂChronic Urticaria Registry (CURE)

rationale, methods, and initial implementation

Karsten Weller (Author), Ana M. Giménez-Arnau (Author), Clive Grattan (Author), Riccardo Asero (Author), Pascale Mathelier-Fusade (Author), Mojca Bizjak (Author), Michael Hanna (Author), Marcus Maurer (Author)

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;

Data

Language:	English
Year of publishing:	2021
Typology:	1.01 - Original Scientific Article
Publisher:	John Wiley & Sons
UDC:	616-097
COBISS:	29914115
ISSN:	1468-3083
Views:	819
Downloads:	438
Average score:	0 (0 votes)
Metadata:

Other data

Secondary keywords:	Urticaria;Registries;Urtikarija;Registri;
Source comment:	Nasl. z nasl. zaslona; Opis vira z dne 25. 9. 2020; Soavtorica iz Slovenije: Mojca Bizjak;
Pages:	str. 721-729
Volume:	ǂVol. ǂ35
Issue:	ǂno. ǂ3
Chronology:	Mar. 2021
DOI:	10.1111/jdv.16947
ID:	12063391