Chronic Urticaria Registry
The chronic urticaria registry (CURE) is a prospective, international, multi-center, observational (non-interventional) disease registry developed and managed by UNEV. With the support of CURE, we seek to enhance our understanding of chronic spontaneous urticaria, chronic inducible urticaria, and urticarial vasculitis. All physicians who treat patients with any of these conditions are warmly invited to join CURE.
Detailed information on how to participate can be found here:
What for?
The aim
The aim of this project is to run a global registry for all patients with urticaria, i.e. chronic spontaneous urticaria, inducible urticaria and as of 2024 also urticarial vasculitis. The registry collects real life data with the objective to improve the knowledge on these conditions, among others regarding its epidemiology e. g. frequency, duration, course of disease, underlying causes, comorbidities, trigger factors, treatment response, costs and impact of disease as well as to globally improve the understanding of these conditions.
The reason why
Background
Chronic Urticaria and Urticarial vasculitis are skin conditions causing persistent hives or swelling. Chronic urticaria lasts over six weeks, often without a known trigger, while urticarial vasculitis involves inflamed blood vessels, with hives lasting longer than 24 hours, sometimes painful or leaving bruises. Both can impact daily life of those effected. Many patients are affected for years and exhibit a severe impairment of their quality of life. As of now, the epidemiology, duration, course, response to treatment and underlying causes are still ill defined. While a registry would be an appropriate tool to assess these features, this was, until 2015, not available.
Therefore, the Chronic Urticaria Registry (CURE) was set up as an academia-driven registry for all subtypes of chronic urticaria to assess these features. CURE is investigator-initiated and hosted by the non for profit limited liability company UNEV gGmbH with support by GA²LEN, EADV and WAO. In addition, it is endorsed by the GA²LEN, EAACI and EADV Task Forces for chronic urticaria. The registry is is open to all chronic urticaria- and urticarial vasculitis-treating physicians and centers.
Join the CURE Network
Advancing Research and Patient Care Together
At CURE, we bring together a diverse network of experts from around the world, fostering collaboration and innovation in research. Here’s how joining the CURE network benefits you and your institution:
- Diverse Expertise: Work alongside leading specialists from various countries, combining knowledge and experiences to tackle complex challenges.
- Resource Sharing: Gain access to shared datasets and utilize CURE’s dedicated personnel for conducting advanced analyses.
- Broader Perspectives: Collaborate with global researchers to enhance the depth and breadth of your study outcomes.
- Co-Authorship Opportunities: Contribute to publications and gain co-authorships in line with the guidelines outlined in the CURE ISC Charter.
- Initiate Your Research: Take the lead on analyses and become a corresponding author on publications.
- Expand Your Knowledge: Deepen your understanding of CSU, CindU, and UV through data analyses, interpretation, reporting, and publishing.
- Stay Informed: Receive regular newsletters with key updates and essential information relevant to your work.
- Enhance Patient Care: Contribute to research that directly improves treatment outcomes and patient care.
Join us in our mission to advance medical research and improve lives through collaboration and innovation.
Update
What is new in CURE?
CURE is now part of the digital world: The patient questionnaire is no longer provided in paper form. Instead, patients will receive a QR code and/or a link from their treating physician. This transition brings several benefits: increased sustainability, reduced administrative effort, and faster data collection!
Expanded Registry and Data Capabilities
We are excited to announce that urticarial vasculitis has been added to our registry. This inclusion allows us to broaden our research and understanding of this condition alongside chronic spontaneous urticaria and chronic inducible urticaria.
Enhanced Data Entry for Comprehensive Analysis
Our digital platform now supports the input of various laboratory values, including:
- Total IgE
- IgG-anti-TPO
- IgE-anti-TPO
- D-dimer
- BHRA
- BAT
- ASST
- And other relevant parameters
This capability ensures a more comprehensive dataset, facilitating advanced research and personalized patient care.
Physician Participation and Data Enrichment
Treating physicians play a crucial role in the success of CURE. With the newly developed physician questionnaire, doctors can contribute vital information for future data analyses. This includes documenting the dominant diagnosis, detailing current and previous medical treatments, and providing other important clinical insights.
By participating in CURE, physicians help create a richer, more detailed database that drives better understanding and management of urticaria and related conditions. Together, we can advance research, improve patient outcomes, and pave the way for innovative treatments.
CURE connects with CRUSE App for Enhanced Chronic Urticaria Tracking and Research
CURE is now also connected to the Chronic Urticaria Self Evaluation App (CRUSE). This app allows patients to document and track their disease activity on a daily basis and provides real-time data to complement our research efforts. Through this valuable add-on, future analyses will benefit from even more accurate and timely information to help researchers advance the understanding and treatment of urticaria. For more information on CRUSE, please visit the website.
What have we achieved?
Current status
Patient inclusion – next milestone 10,000 patients
- 7,800 of 10,000 patients 78%
Centers worldwide – next milestone 100 centers
- 79 of 100 centers 79%
Scientific Publications – next milestone 10 publications
- 5 of 10 manuscripts published 50%