The Chronic Urticaria Registry (CURE) : rationale, methods, and initial implementation
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.
© 2020 The Authors.
2020
2020-10-07 09:37:20
1033
urticaria, registries
urtikarija, registri
Karsten
Weller
70
Ana M.
Giménez-Arnau
70
Clive
Grattan
70
Riccardo
Asero
70
Pascale
Mathelier-Fusade
70
Mojca
Bizjak
70
Michael
Hanna
70
Marcus
Maurer
70
UDK
4
616-097
ISSN pri članku
9
1468-3083
DOI
15
10.1111/jdv.16947
COBISS_ID
3
29914115
OceCobissID
13
23368965
0
Predstavitvena datoteka
2020-10-07 09:37:23
RAZ_Weller_Karsten_i2020.pdf
258261
Predstavitvena datoteka
2021-05-14 13:09:14