The Chronic Angioedema Registry (CARE): Rationale, Methods and Implementation

T Buttgereit^{1

2}, F Aulenbacher^{1

2}, A Gutsche^{1

2}, P Kolkhir^{1

2}, K Weller^{1

2}, C Vera Ayala^{1

2}, M Magerl^{1

2}, H Farkas³, A S Grumach⁴, E Aygören-Pürsün⁵, N Bara⁶, M Ben-Shoshan⁷, J Bernstein⁸, S Betschel⁹, L Bouillet^{10

11}, T Caballero¹², M Cancian¹³, A J Castaldo¹⁴, S Cimbollek¹⁵, D M Cohn¹⁶, T Craig^{17

18}, D Fomina^{19

20

21}, A Gelincik²², V Grivcheva-Panovska²³, A Jindal²⁴, C Katelaris²⁵, A Kessel²⁶, T Kinaciyan²⁷, H J Longhurst^{28

29}, I Martinez-Saguer³⁰, M Riedl³¹, C Schöffl³², P Staubach³³, A Zanichelli^{34

35}, Y Zhi³⁶, H Balle Boysen¹⁴, J S Fok^{37

38

39}, P H Li⁴⁰, R Hakl⁴¹, M Hide^{42

43}, J Peter^{44

45}, M Maurer^{1

2}

Affiliations

¹ Angioedema Center of Reference and Excellence (ACARE), Institute of Allergology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität Zu Berlin, Berlin, Germany.
² Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Immunology and Allergology, Berlin, Germany.
³ Hungarian Angioedema Center of Reference and Excellence (ACARE), Department of Internal Medicine and Haematology, Semmelweis University, Budapest, Hungary.
⁴ Angioedema Center of Reference and Excellence (ACARE), Clinical Immunology, University Center Faculdade de Medicina Do ABC, Santo André, Brazil.
⁵ Department of Pediatrics, University Hospital Frankfurt, Goethe University Frankfurt, Frankfurt, Germany.
⁶ Romanian Hereditary Angioedema Expertise Centre, Centru Clinic Mediquest, Sangeorgiu de Mures, Romania.
⁷ Division of Allergy, Immunology and Dermatology, Department of Pediatrics, Montreal Children's Hospital, McGill University, Montreal, Quebec, Canada.
⁸ Department of Internal Medicine, Division of Rheumatology, Allergy and Immunology, Angioedema Center of Reference and Excellence (ACARE), University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
⁹ Department of Medicine, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada.
¹⁰ Angioedema Center of Reference and Excellence (ACARE), National Reference Center of Angioedema CREAK, Grenoble, France.
¹¹ Internal Medicine Department, Grenoble University Hospital, Grenoble, France.
¹² Angioedema Center of Reference and Excellence (ACARE), Hereditary Angioedema National Reference Center (CSUR), Department of Allergy, La Paz University Hospital, Hospital La Paz Institute for Health Research (IdiPAZ - Group 44), Biomedical Research Network on Rare Diseases (CIBERER U754), Madrid, Spain.
¹³ Angioedema Center of Reference and Excellence (ACARE), Departmental Unit of Allergology, University Hospital of Padua, Padua, Italy.
¹⁴ HAE International - HAEi, Fairfax City, Virginia, USA.
¹⁵ Hospital U. Virgen del Rocío, Sevilla, Spain.
¹⁶ Angioedema Center of Reference and Excellence (ACARE), Amsterdam UMC, Department of Vascular Medicine, Amsterdam Cardiovascular Sciences, University of Amsterdam, Amsterdam, Netherlands.
¹⁷ Angioedema Center of Reference and Excellence (ACARE), Department of Medicine, Pediatrics and Biomedical Sciences, Pennsylvania State University, Hershey, Pennsylvania, USA.
¹⁸ International Hospital, Times City, Hanoi, Vietnam.
¹⁹ Angioedema Center of Reference and Excellence (ACARE), Moscow Clinical and Research Center of Allergology and Immunology, Clinical Hospital No 52, Moscow Healthcare Department, Moscow, Russia.
²⁰ Department of Clinical Immunology and Allergology, I. M. Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russia.
²¹ Department of Pulmonology, Astana Medical University, Astana, Kazakhstan.
²² Angioedema Center of Reference and Excellence (ACARE), Division of Immunology and Allergic Diseases, Department of Internal Medicine, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey.
²³ Angioedema Center of Reference and Excellence (ACARE), University Clinic of Dermatology, Ss Cyril and Methodius University, Skopje, Macedonia.
²⁴ Angioedema Center of Reference and Excellence (ACARE), Allergy Immunology Unit, Department of Pediatrics, Advanced Pediatrics Centre, Post-Graduate Institute of Medical Education and Research (PGIMER), Chandigarh, India.
²⁵ Angioedema Center of Reference and Excellence (ACARE), Western Sydney University and Campbelltown Hospital, Campbelltown, New South Wales, Australia.
²⁶ Angioedema Center of Reference and Excellence (ACARE), Division of Allergy and Clinical Immunology, Bnai Zion Medical Center and the Bruce and Ruth Rappaport Faculty of Medicine, Technion, Haifa, Israel.
²⁷ Angioedema Center of Reference and Excellence (ACARE), Department of Dermatology, Medical University of Vienna, Vienna, Austria.
²⁸ Department of Medicine, University of Auckland, Auckland, New Zealand.
²⁹ Department of Immunology, Auckland City Hospital, Auckland, New Zealand.
³⁰ Pediatrics, Haemophilia Centre Rhine Main (HZRM), Moerfelden-Walldorf, Germany.
³¹ Division of Rheumatology, Allergy, and Immunology, University of California San Diego, La Jolla, California, USA.
³² Department of Dermatology, Medical University of Graz, Graz, Austria.
³³ Angioedema Center of Reference and Excellence (ACARE), Department of Dermatology, University Medical Center Mainz, Mainz, Germany.
³⁴ Departamento di Scienze Biomediche per la Salute, Università Degli Studi di Milano, Milan, Italy.
³⁵ Operative Unit of Medicine, IRCCS Policlinico San Donato, San Donato Milanese, Milan, Italy.
³⁶ Department of Allergy, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, China.
³⁷ Angioedema Center of Reference and Excellence (ACARE), Department of Respiratory Medicine and General Medicine, Box Hill Hospital, Eastern Health, Melbourne, Victoria, Australia.
³⁸ Monash Lung, Sleep and Allergy/Immunology, Monash Medical Centre, Melbourne, Victoria, Australia.
³⁹ Eastern Health Clinical School, Monash University, Melbourne, Victoria, Australia.
⁴⁰ Angioedema Center of Reference and Excellence (ACARE), Division of Rheumatology and Clinical Immunology, Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, Hong Kong.
⁴¹ Department of Clinical Immunology and Allergology, St. Anne's University Hospital in Brno and Faculty of Medicine, Masaryk University, Brno, Czech Republic.
⁴² Angioedema Center of Reference and Excellence (ACARE), Department of Dermatology, Graduate School of Biomedical & Health Sciences, Hiroshima University, Hiroshima, Japan.
⁴³ Department of Dermatology, Hiroshima City Hiroshima Citizens Hospital, Hiroshima, Japan.
⁴⁴ Angioedema Center of Reference and Excellence (ACARE), Division of Allergy and Clinical Immunology, Department of Medicine, University of Cape Town, Cape Town, South Africa.
⁴⁵ Allergy and Immunology Unit, University of Cape Town Lung Institute, Cape Town, South Africa.

PMID: 38924594
DOI: 10.1111/cea.14527

The Chronic Angioedema Registry (CARE): Rationale, Methods and Implementation

T Buttgereit et al. Clin Exp Allergy. 2024 Sep.

. 2024 Sep;54(9):712-716.

doi: 10.1111/cea.14527. Epub 2024 Jun 24.

Authors

Affiliations

¹ Angioedema Center of Reference and Excellence (ACARE), Institute of Allergology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität Zu Berlin, Berlin, Germany.
² Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Immunology and Allergology, Berlin, Germany.
³ Hungarian Angioedema Center of Reference and Excellence (ACARE), Department of Internal Medicine and Haematology, Semmelweis University, Budapest, Hungary.
⁴ Angioedema Center of Reference and Excellence (ACARE), Clinical Immunology, University Center Faculdade de Medicina Do ABC, Santo André, Brazil.
⁵ Department of Pediatrics, University Hospital Frankfurt, Goethe University Frankfurt, Frankfurt, Germany.
⁶ Romanian Hereditary Angioedema Expertise Centre, Centru Clinic Mediquest, Sangeorgiu de Mures, Romania.
⁷ Division of Allergy, Immunology and Dermatology, Department of Pediatrics, Montreal Children's Hospital, McGill University, Montreal, Quebec, Canada.
⁸ Department of Internal Medicine, Division of Rheumatology, Allergy and Immunology, Angioedema Center of Reference and Excellence (ACARE), University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
⁹ Department of Medicine, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada.
¹⁰ Angioedema Center of Reference and Excellence (ACARE), National Reference Center of Angioedema CREAK, Grenoble, France.
¹¹ Internal Medicine Department, Grenoble University Hospital, Grenoble, France.
¹² Angioedema Center of Reference and Excellence (ACARE), Hereditary Angioedema National Reference Center (CSUR), Department of Allergy, La Paz University Hospital, Hospital La Paz Institute for Health Research (IdiPAZ - Group 44), Biomedical Research Network on Rare Diseases (CIBERER U754), Madrid, Spain.
¹³ Angioedema Center of Reference and Excellence (ACARE), Departmental Unit of Allergology, University Hospital of Padua, Padua, Italy.
¹⁴ HAE International - HAEi, Fairfax City, Virginia, USA.
¹⁵ Hospital U. Virgen del Rocío, Sevilla, Spain.
¹⁶ Angioedema Center of Reference and Excellence (ACARE), Amsterdam UMC, Department of Vascular Medicine, Amsterdam Cardiovascular Sciences, University of Amsterdam, Amsterdam, Netherlands.
¹⁷ Angioedema Center of Reference and Excellence (ACARE), Department of Medicine, Pediatrics and Biomedical Sciences, Pennsylvania State University, Hershey, Pennsylvania, USA.
¹⁸ International Hospital, Times City, Hanoi, Vietnam.
¹⁹ Angioedema Center of Reference and Excellence (ACARE), Moscow Clinical and Research Center of Allergology and Immunology, Clinical Hospital No 52, Moscow Healthcare Department, Moscow, Russia.
²⁰ Department of Clinical Immunology and Allergology, I. M. Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russia.
²¹ Department of Pulmonology, Astana Medical University, Astana, Kazakhstan.
²² Angioedema Center of Reference and Excellence (ACARE), Division of Immunology and Allergic Diseases, Department of Internal Medicine, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey.
²³ Angioedema Center of Reference and Excellence (ACARE), University Clinic of Dermatology, Ss Cyril and Methodius University, Skopje, Macedonia.
²⁴ Angioedema Center of Reference and Excellence (ACARE), Allergy Immunology Unit, Department of Pediatrics, Advanced Pediatrics Centre, Post-Graduate Institute of Medical Education and Research (PGIMER), Chandigarh, India.
²⁵ Angioedema Center of Reference and Excellence (ACARE), Western Sydney University and Campbelltown Hospital, Campbelltown, New South Wales, Australia.
²⁶ Angioedema Center of Reference and Excellence (ACARE), Division of Allergy and Clinical Immunology, Bnai Zion Medical Center and the Bruce and Ruth Rappaport Faculty of Medicine, Technion, Haifa, Israel.
²⁷ Angioedema Center of Reference and Excellence (ACARE), Department of Dermatology, Medical University of Vienna, Vienna, Austria.
²⁸ Department of Medicine, University of Auckland, Auckland, New Zealand.
²⁹ Department of Immunology, Auckland City Hospital, Auckland, New Zealand.
³⁰ Pediatrics, Haemophilia Centre Rhine Main (HZRM), Moerfelden-Walldorf, Germany.
³¹ Division of Rheumatology, Allergy, and Immunology, University of California San Diego, La Jolla, California, USA.
³² Department of Dermatology, Medical University of Graz, Graz, Austria.
³³ Angioedema Center of Reference and Excellence (ACARE), Department of Dermatology, University Medical Center Mainz, Mainz, Germany.
³⁴ Departamento di Scienze Biomediche per la Salute, Università Degli Studi di Milano, Milan, Italy.
³⁵ Operative Unit of Medicine, IRCCS Policlinico San Donato, San Donato Milanese, Milan, Italy.
³⁶ Department of Allergy, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, China.
³⁷ Angioedema Center of Reference and Excellence (ACARE), Department of Respiratory Medicine and General Medicine, Box Hill Hospital, Eastern Health, Melbourne, Victoria, Australia.
³⁸ Monash Lung, Sleep and Allergy/Immunology, Monash Medical Centre, Melbourne, Victoria, Australia.
³⁹ Eastern Health Clinical School, Monash University, Melbourne, Victoria, Australia.
⁴⁰ Angioedema Center of Reference and Excellence (ACARE), Division of Rheumatology and Clinical Immunology, Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, Hong Kong.
⁴¹ Department of Clinical Immunology and Allergology, St. Anne's University Hospital in Brno and Faculty of Medicine, Masaryk University, Brno, Czech Republic.
⁴² Angioedema Center of Reference and Excellence (ACARE), Department of Dermatology, Graduate School of Biomedical & Health Sciences, Hiroshima University, Hiroshima, Japan.
⁴³ Department of Dermatology, Hiroshima City Hiroshima Citizens Hospital, Hiroshima, Japan.
⁴⁴ Angioedema Center of Reference and Excellence (ACARE), Division of Allergy and Clinical Immunology, Department of Medicine, University of Cape Town, Cape Town, South Africa.
⁴⁵ Allergy and Immunology Unit, University of Cape Town Lung Institute, Cape Town, South Africa.

PMID: 38924594
DOI: 10.1111/cea.14527

No abstract available

Keywords: ACARE; CARE; angioedema; chronic; registry.

PubMed Disclaimer

References

1. A. Reshef, T. Buttgereit, S. D. Betschel, et al., “The Definition, Acronyms, Nomenclature, and Classification of Angioedema: AAAAI, ACAAI, ACARE, and APAACI DANCE Consensus,” Journal of Allergy and Clinical Immunology (2024), https://doi.org/10.1016/j.jaci.2024.03.024.
1. K. Weller, T. Donoso, M. Magerl, et al., “Validation of the Angioedema Control Test (AECT)—A Patient‐Reported Outcome Instrument for Assessing Angioedema Control,” Journal of Allergy and Clinical Immunology in Practice 8, no. 6 (2020): 2050–2057.e4, https://doi.org/10.1016/j.jaip.2020.02.038.
1. K. Weller, A. Groffik, M. Magerl, et al., “Development and Construct Validation of the Angioedema Quality of Life Questionnaire,” Allergy 67, no. 10 (2012): 1289–1298, https://doi.org/10.1111/all.12007.
1. A. Zanichelli, H. Farkas, L. Bouillet, et al., “The Global Registry for Hereditary Angioedema Due to C1‐Inhibitor Deficiency,” Clinical Reviews in Allergy and Immunology 61, no. 1 (2021): 77–83, https://doi.org/10.1007/s12016‐021‐08855‐4.
1. K. Weller, A. Giménez‐Arnau, C. Grattan, et al., “The Chronic Urticaria Registry: Rationale, Methods and Initial Implementation,” Journal of the European Academy of Dermatology and Venereology 35, no. 3 (2021): 721–729, https://doi.org/10.1111/jdv.16947.

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The Chronic Angioedema Registry (CARE): Rationale, Methods and Implementation

Affiliations

The Chronic Angioedema Registry (CARE): Rationale, Methods and Implementation

Authors

Affiliations

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources