ǂThe ǂChronic Urticaria Registry (CURE)

rationale, methods, and initial implementation

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

Povzetek

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.

Ključne besede

urticaria;registries;

Podatki

Jezik:	Angleški jezik
Leto izida:	2021
Tipologija:	1.01 - Izvirni znanstveni članek
Založnik:	John Wiley & Sons
UDK:	616-097
COBISS:	29914115
ISSN:	1468-3083
Št. ogledov:	819
Št. prenosov:	438
Ocena:	0 (0 glasov)
Metapodatki:

Ostali podatki

Sekundarne ključne besede:	Urticaria;Registries;Urtikarija;Registri;
Komentar vira:	Nasl. z nasl. zaslona; Opis vira z dne 25. 9. 2020; Soavtorica iz Slovenije: Mojca Bizjak;
Strani:	str. 721-729
Letnik:	ǂVol. ǂ35
Zvezek:	ǂno. ǂ3
Čas izdaje:	Mar. 2021
DOI:	10.1111/jdv.16947
ID:	12063391