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

Thomas Buttgereit; Mathias Sulk; Jonathan A Bernstein; Alicja Kasperska-Zajac; Andreas Kleinheinz; Ankur Jindal; Anna Valerieva; Danny M. Cohn; Henriette Farkas; Herberto Jose Chong-Neto; Ivan Cherrez-Ojeda; Ivan Markovic; Kanokvalai Kulthanan; Mohamed Abuzakouk; Moshe Ben-Shoshan; Murat Türk; Natasa Teovska Mitrevska; Noemi A. Bara; Oscar Calderon  Llosa; Philip Li; Ramon Lleonart  Bellfill; Renate Krüger; Riccardo Senter; Roman Hakl; Sabine Altrichter; Simon Francis Thomsen; Stefan Cimbollek; Nevenka Adjievska; Lāsma Lapiņa; Jonny Peter

doi:10.3389/falgy.2026.1799211

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

Thomas Buttgereit^*
, Mathias Sulk
, Jonathan A Bernstein
, Alicja Kasperska-Zajac
, Andreas Kleinheinz
, Ankur Jindal
, Anna Valerieva
, Danny M. Cohn
, Henriette Farkas
, Herberto Jose Chong-Neto
, Ivan Cherrez-Ojeda
, Ivan Markovic
, Kanokvalai Kulthanan
, Mohamed Abuzakouk
, Moshe Ben-Shoshan
, Murat Türk
, Natasa Teovska Mitrevska
, Noemi A. Bara
, Oscar Calderon Llosa
, Philip Li

Ramon Lleonart Bellfill, Renate Krüger, Riccardo Senter, Roman Hakl, Sabine Altrichter, Simon Francis Thomsen, Stefan Cimbollek, Nevenka Adjievska, Lāsma Lapiņa, Jonny Peter

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

1 Citation (Scopus)

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.

Original language	English
Number of pages	10
Journal	Frontiers in Allergy
Volume	7
DOIs	https://doi.org/10.3389/falgy.2026.1799211
Publication status	Published - 22 Jun 2026
Externally published	Yes

Keywords*

angioedema
CARE
disease registry
hereditary angioedema
rare disease

Field of Science

3.3 Health sciences

Publication Type*

1.1. Scientific article indexed in Web of Science and/or Scopus database

Access to Document

10.3389/falgy.2026.1799211Licence: CC BY

The Chronic AngioedemaFinal published version, 789 KBLicence: CC BY

Cite this

Buttgereit, T., Sulk, M., Bernstein, J. A., Kasperska-Zajac, A., Kleinheinz, A., Jindal, A., Valerieva, A., Cohn, D. M., Farkas, H., Chong-Neto, H. J., Cherrez-Ojeda, I., Markovic, I., Kulthanan, K., Abuzakouk, M., Ben-Shoshan, M., Türk, M., Teovska Mitrevska, N., Bara, N. A., Llosa, O. C., ... Peter, J. (2026). The Chronic Angioedema Registry: what the first 2 years since the implementation of the global registry have taught us. Frontiers in Allergy, 7. https://doi.org/10.3389/falgy.2026.1799211

@article{51caa360bf7842138ac2c383963bb8a6,

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

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{\textendash}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.",

keywords = "angioedema, CARE, disease registry, hereditary angioedema, rare disease",

author = "Thomas Buttgereit and Mathias Sulk and Bernstein, \{Jonathan A\} and Alicja Kasperska-Zajac and Andreas Kleinheinz and Ankur Jindal and Anna Valerieva and Cohn, \{Danny M.\} and Henriette Farkas and Chong-Neto, \{Herberto Jose\} and Ivan Cherrez-Ojeda and Ivan Markovic and Kanokvalai Kulthanan and Mohamed Abuzakouk and Moshe Ben-Shoshan and Murat T{\"u}rk and \{Teovska Mitrevska\}, Natasa and Bara, \{Noemi A.\} and Llosa, \{Oscar Calderon\} and Philip Li and Bellfill, \{Ramon Lleonart\} and Renate Kr{\"u}ger and Riccardo Senter and Roman Hakl and Sabine Altrichter and Simon Francis Thomsen and Stefan Cimbollek and Nevenka Adjievska and Lāsma Lapiņa and Jonny Peter",

note = "Publisher Copyright: {\textcopyright} 2026 Buttgereit, Sulk, Bernstein, Kasperska-Zajac, Kleinheinz, Jindal, Valerieva, Cohn, Farkas, Chong-Neto, Cherrez-Ojeda, Markovic, Kulthanan, Abuzakouk, Ben-Shoshan, T{\"u}rk, Teovska Mitrevska, Bara, Calderon Llosa, Li, Bellfill, Kr{\"u}ger, Senter, Hakl, Altrichter, Thomsen, Cimbollek, Adjievska, Lapina and Peter.",

year = "2026",

month = jun,

day = "22",

doi = "10.3389/falgy.2026.1799211",

language = "English",

volume = "7",

journal = "Frontiers in Allergy",

issn = "2673-6101",

publisher = "Frontiers Media SA",

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Buttgereit, T, Sulk, M, Bernstein, JA, Kasperska-Zajac, A, Kleinheinz, A, Jindal, A, Valerieva, A, Cohn, DM, Farkas, H, Chong-Neto, HJ, Cherrez-Ojeda, I, Markovic, I, Kulthanan, K, Abuzakouk, M, Ben-Shoshan, M, Türk, M, Teovska Mitrevska, N, Bara, NA, Llosa, OC, Li, P, Bellfill, RL, Krüger, R, Senter, R, Hakl, R, Altrichter, S, Thomsen, SF, Cimbollek, S, Adjievska, N, Lapiņa, L & Peter, J 2026, 'The Chronic Angioedema Registry: what the first 2 years since the implementation of the global registry have taught us', Frontiers in Allergy, vol. 7. https://doi.org/10.3389/falgy.2026.1799211

TY - JOUR

T1 - The Chronic Angioedema Registry

T2 - what the first 2 years since the implementation of the global registry have taught us

AU - Buttgereit, Thomas

AU - Sulk, Mathias

AU - Bernstein, Jonathan A

AU - Kasperska-Zajac, Alicja

AU - Kleinheinz, Andreas

AU - Jindal, Ankur

AU - Valerieva, Anna

AU - Cohn, Danny M.

AU - Farkas, Henriette

AU - Chong-Neto, Herberto Jose

AU - Cherrez-Ojeda, Ivan

AU - Markovic, Ivan

AU - Kulthanan, Kanokvalai

AU - Abuzakouk, Mohamed

AU - Ben-Shoshan, Moshe

AU - Türk, Murat

AU - Teovska Mitrevska, Natasa

AU - Bara, Noemi A.

AU - Llosa, Oscar Calderon

AU - Li, Philip

AU - Bellfill, Ramon Lleonart

AU - Krüger, Renate

AU - Senter, Riccardo

AU - Hakl, Roman

AU - Altrichter, Sabine

AU - Thomsen, Simon Francis

AU - Cimbollek, Stefan

AU - Adjievska, Nevenka

AU - Lapiņa, Lāsma

AU - Peter, Jonny

N1 - Publisher Copyright: © 2026 Buttgereit, Sulk, Bernstein, Kasperska-Zajac, Kleinheinz, Jindal, Valerieva, Cohn, Farkas, Chong-Neto, Cherrez-Ojeda, Markovic, Kulthanan, Abuzakouk, Ben-Shoshan, Türk, Teovska Mitrevska, Bara, Calderon Llosa, Li, Bellfill, Krüger, Senter, Hakl, Altrichter, Thomsen, Cimbollek, Adjievska, Lapina and Peter.

PY - 2026/6/22

Y1 - 2026/6/22

N2 - 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.

AB - 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.

KW - angioedema

KW - CARE

KW - disease registry

KW - hereditary angioedema

KW - rare disease

UR - https://www-webofscience-com.db.rsu.lv/wos/alldb/full-record/WOS:001811465200001

UR - https://www-scopus-com.db.rsu.lv/pages/publications/105044568828?origin=resultslist

U2 - 10.3389/falgy.2026.1799211

DO - 10.3389/falgy.2026.1799211

M3 - Article

SN - 2673-6101

VL - 7

JO - Frontiers in Allergy

JF - Frontiers in Allergy

ER -

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

Abstract

Keywords*

Field of Science

Publication Type*

Access to Document

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