The Chronic Angioedema Registry: what the first 2 years since the implementation of the global registry have taught us

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Buttgereit T., Sulk M., Bernstein J. A., Kasperska-Zajac A., Kleinheinz A., Jindal A., ...Daha Fazla

FRONTIERS IN ALLERGY, cilt.7, 2026 (ESCI, Scopus)

Özet

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.