| Title: | The Chronic Urticaria Registry (CURE) : rationale, methods, and initial implementation |
|---|
| Authors: | ID Weller, Karsten (Author)
ID Giménez-Arnau, Ana M. (Author)
ID Grattan, Clive (Author)
ID Asero, Riccardo (Author)
ID Mathelier-Fusade, Pascale (Author)
ID Bizjak, Mojca, Klinika Golnik (Author)
ID Hanna, Michael (Author)
ID Maurer, Marcus (Author) |
|---|
| Files: |  PDF - Presentation file, download (252,21 KB)
MD5: A6759881F8489241A254C3F1F76CF4BF
 URL - Presentation file, visit https://onlinelibrary.wiley.com/doi/epdf/10.1111/jdv.16947
|
|---|
| Language: | English |
|---|
| Typology: | 1.03 - Other scientific articles |
|---|
| Organization: |  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 |
|---|
| Publication status: | In print |
|---|
| Publication version: | Author Accepted Manuscript |
|---|
| Place of publishing: | ZDA |
|---|
| Publisher: | John Wiley & Sons |
|---|
| Year of publishing: | 2020 |
|---|
| Number of pages: | str. [1-22] |
|---|
| Numbering: | Vol. 34, no. |
|---|
| PID: | 20.500.12556/DiRROS-12523  |
|---|
| UDC: | 616-097 |
|---|
| ISSN on article: | 1468-3083 |
|---|
| DOI: | 10.1111/jdv.16947 |
|---|
| COBISS.SI-ID: | 29914115 |
|---|
| Copyright: | © 2020 The Authors. |
|---|
| Note: | Nasl. z nasl. zaslona;
Opis vira z dne 25. 9. 2020;
Soavtorica iz Slovenije: Mojca Bizjak;
|
|---|
| Publication date in DiRROS: | 07.10.2020 |
|---|
| Views: | 1768 |
|---|
| Downloads: | 946 |
|---|
| Metadata: |    |
|---|
|
:
|
Copy citation |
|---|
| | | | Share: |  |
|---|
Hover the mouse pointer over a document title to show the abstract or click
on the title to get all document metadata. |
