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Naslov:The Chronic Urticaria Registry (CURE) : rationale, methods, and initial implementation
Avtorji:Weller, Karsten (Avtor)
Giménez-Arnau, Ana M. (Avtor)
Grattan, Clive (Avtor)
Asero, Riccardo (Avtor)
Mathelier-Fusade, Pascale (Avtor)
Bizjak, Mojca (Avtor)
Hanna, Michael (Avtor)
Maurer, Marcus (Avtor)
Jezik:Angleški jezik
Tipologija:1.03 - Kratki znanstveni prispevek
Organizacija:Logo UKPBAG - Univerzitetna klinika za pljučne bolezni in alergijo Golnik
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
Leto izida:2020
Založnik:John Wiley & Sons
Izvor:ZDA
UDK:616-097
ISSN pri članku:1468-3083
OceCobissID:23368965 Povezava se odpre v novem oknu
COBISS_ID:29914115 Povezava se odpre v novem oknu
DOI:10.1111/jdv.16947 Povezava se odpre v novem oknu
Opombe:Nasl. z nasl. zaslona; Opis vira z dne 25. 9. 2020; Soavtorica iz Slovenije: Mojca Bizjak;
Število ogledov:510
Število prenosov:254
Datoteke:URL URL - Predstavitvena datoteka, za dostop obiščite https://onlinelibrary.wiley.com/doi/epdf/10.1111/jdv.16947
.pdf PDF - Predstavitvena datoteka, prenos (252,21 KB)
 
Nadgradivo:Journal of the European Academy of Dermatology and Venereology
John Wiley & Sons
 
Metapodatki:XML RDF-CHPDL DC-XML DC-RDF
Avtorske pravice:© 2020 The Authors.
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Licence

Licenca:CC BY-NC-ND 4.0, Creative Commons Priznanje avtorstva-Nekomercialno-Brez predelav 4.0 Mednarodna
Povezava:http://creativecommons.org/licenses/by-nc-nd/4.0/deed.sl
Opis:Najbolj omejujoča licenca Creative Commons. Uporabniki lahko prenesejo in delijo delo v nekomercialne namene in ga ne smejo uporabiti za nobene druge namene.
Začetek licenciranja:18.09.2020

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