The Chronic Urticaria Registry: rationale, methods and initial implementation

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 CU patients. This report describes the rationale, methods and initial implementation of this registry. Methods Chronic Urticaria Registry is an ongoing, prospective, international, multicentre, 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 Chronic Urticaria Registry is a landmark achievement of the global urticaria medical community. As of 26 February 2020, 39 centres 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 Chronic Urticaria Registry 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.

The global burden of chronic urticaria for the patient and society*

“…We also need more information on special populations (pregnant and nursing mothers), the different subgroups of CSU that have already been identified (type IIb autoimmune or autoallergic CSU), and the different types of CIndU (dermographism, cholinergic urticaria, cold‐induced urticaria, pressure urticaria, solar urticaria). This will be possible only if physicians and centres managing CU work together, as they do in the network of UCAREs (Urticaria Centers of Reference and Excellence), 125 and contribute cases to multicentre studies and registries like CURE (Chronic Urticaria Registry) 126 . This will allow for the collection of big data to characterize better the different CU phenotypes and their pathomechanisms and, accordingly, to define optimal treatment strategies that will improve the prognosis and reduce the burden of CU.…”

“…This will be possible only if physicians and centres managing CU work together, as they do in the network of UCAREs (Urticaria Centers of Reference and Excellence), 125 and contribute cases to multicentre studies and registries like CURE (Chronic Urticaria Registry). 126 This will allow for the collection of big data to characterize better the different CU phenotypes and their pathomechanisms and, accordingly, to define optimal treatment strategies that will improve the prognosis and reduce the burden of CU.…”

BSACI Registry for Immunotherapy (BRIT): Providing safe and effective immunotherapy for allergies and urticaria

“…Chronic spontaneous urticaria has been the focus of registry development with the global CURE (Chronic Urticaria REgistry) registry collecting data from 39 sites and 2,946 individuals. 7 Most surveys provide useful snap shots but do not record on going care in a prospective manner. In contrast, BRIT collects prospective data with participants contributing real world effectiveness and safety data both during and after treatment.…”

The Role of Anti-IgE Antibodies in Urticaria

“…Currently, two specific QoL questionnaires are available for evaluating the burden of CU on patients: Chronic Urticaria Quality of Life (CU-Q2oL) and Angioedema Quality of Life (AE-QoL). Moreover, in order to collect quality, real-life data on CU patient characteristics, the course of disease, underlying causes, comorbidities, treatment responses, quality of life impairment and health care costs the Chronic Urticaria Registry was recently set up [10]. (a-h): Urticaria is characterised by an outbreak of swollen, pale red bumps or plaques on the skin (wheals) and can also manifest as deep swelling around the eyes, lips, and face (angioedema) that appears suddenly.…”