ArticleFrontiers in allergy2026
The Chronic Angioedema Registry: what the first 2 years since the implementation of the global registry have taught us.
Article in Frontiers in allergy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
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Authors and funding
30 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: The Chronic Angioedema Registry (CARE) is the first international, multicenter observational registry established to systematically collect clinical and patient-reported data from patients with recurrent angioedema of any type during routine clinical care. Here we report enrollment after 2 years of CARE, discuss challenges and present ideas to overcome them. Methods: Registry growth, recruitment yield, and distribution of angioedema diagnosis were analyzed descriptively as of December 12, 2025. Additionally, a structured web-based survey was conducted among physicians within the network of Angioedema Centers of Reference and Excellence to assess participation status, perceived barriers and facilitators, satisfaction, and communication preferences. Results: Since its inception in October 2023, CARE enrolled 550 patients across 23 centers in 18 countries [mean (range): 24 (0-302)/center, 31 (0-321)/country], achieving predefined milestones on schedule. Hereditary angioedema and mast cell-mediated angioedema were the most frequent diagnoses. The survey included 22 respondents from 18 countries, representing centers at different stages of participation. Administrative and organizational challenges, particularly ethics approval processes and limited staff resources, were identified as the main barriers. Overall satisfaction with CARE was high, increasing with advanced participation. Flexible handling of regulatory requirements, strong onboarding support, and training materials were perceived as key facilitators. Conferences, in-person meetings, and newsletters were the preferred communication channels. Discussion: CARE has rapidly evolved into a robust global real-world resource for recurrent angioedema. Addressing regulatory and organizational barriers and strengthening tailored support and communication strategies will be essential to sustain growth, enhance participation, and maximize its long-term scientific and clinical impact.
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