Adult Severe Asthma Registries: A Global and Growing Inventory

Breda Cushen; Mariko Siyue Koh; Trung N Tran; Neil Martin; Ruth Murray; Thendral Uthaman; Celine Yun Yi Goh; Rebecca Vella; Neva Eleangovan; Lakmini Bulathsinhala; Jorge F Maspero; Matthew J Peters; Florence Schleich; Paulo Pitrez; George Christoff; Mohsen Sadatsafavi; Carlos A Torres-Duque; Celeste Porsbjerg; Alan Altraja; Lauri Lehtimäki; Arnaud Bourdin; Christian Taube; Nikolaos G Papadopoulos; Csoma Zsuzsanna; Unnur Björnsdóttir; Sundeep Salvi; Enrico Heffler; Takashi Iwanaga; Mona Al-Ahmad; Désirée Larenas-Linnemann; Job F M van Boven; Bernt Bøgvald Aarli; Piotr Kuna; Cláudia Chaves Loureiro; Riyad Al-Lehebi; Jae Ha Lee; Nuria Marina; Leif Bjermer; Chau-Chyun Sheu; Bassam Mahboub; John Busby; Andrew Menzies-Gow; Eileen Wang; David B Price; ISAR Inventory Study Group

doi:10.2147/POR.S399879

Adult Severe Asthma Registries: A Global and Growing Inventory

Pragmat Obs Res. 2023 Oct 20:14:127-147. doi: 10.2147/POR.S399879. eCollection 2023.

Authors

Breda Cushen^#¹, Mariko Siyue Koh^#², Trung N Tran³, Neil Martin^{3

4}, Ruth Murray⁵, Thendral Uthaman⁶, Celine Yun Yi Goh^{5

6}, Rebecca Vella⁷, Neva Eleangovan^{5

6}, Lakmini Bulathsinhala^{5

6}, Jorge F Maspero^{8

9}, Matthew J Peters¹⁰, Florence Schleich¹¹, Paulo Pitrez¹², George Christoff¹³, Mohsen Sadatsafavi¹⁴, Carlos A Torres-Duque^{15

16}, Celeste Porsbjerg¹⁷, Alan Altraja¹⁸, Lauri Lehtimäki¹⁹, Arnaud Bourdin²⁰, Christian Taube²¹, Nikolaos G Papadopoulos^{22

23}, Csoma Zsuzsanna²⁴, Unnur Björnsdóttir²⁵, Sundeep Salvi²⁶, Enrico Heffler²⁷, Takashi Iwanaga²⁸, Mona Al-Ahmad²⁹, Désirée Larenas-Linnemann³⁰, Job F M van Boven³¹, Bernt Bøgvald Aarli^{32

33}, Piotr Kuna³⁴, Cláudia Chaves Loureiro^{35

36}, Riyad Al-Lehebi³⁷, Jae Ha Lee³⁸, Nuria Marina³⁹, Leif Bjermer⁴⁰, Chau-Chyun Sheu^{41

42}, Bassam Mahboub⁴³, John Busby⁴⁴, Andrew Menzies-Gow⁴⁵, Eileen Wang⁴⁶, David B Price^{5

6

47}; ISAR Inventory Study Group

Affiliations

¹ Department of Respiratory Medicine, Beaumont Hospital, Dublin, Ireland.
² Department of Respiratory and Critical Care Medicine, Singapore General Hospital, Singapore, Singapore.
³ AstraZeneca, Gaithersburg, MD, USA.
⁴ Department of Respiratory Medicine, University of Leicester, Leicester, UK.
⁵ Optimum Patient Care Global, Cambridge, UK.
⁶ Observational Pragmatic Research Institute, Singapore, Singapore.
⁷ Optimum Patient Care, Brisbane, Queensland, Australia.
⁸ Clinical Research for Allergy and Respiratory Medicine, CIDEA Foundation, Buenos Aires, Argentina.
⁹ University Career of Specialists in Allergy and Clinical Immunology at the Buenos Aires University School of Medicine, Buenos Aires, Argentina.
¹⁰ Department of Thoracic Medicine, Concord Hospital, Sydney, Australia.
¹¹ CHU Sart-Tilman, GIGA I3, University of Liege, Liège, Wallonia, Belgium.
¹² Pulmonology Division, Hospital Santa Casa de Porto Alegre, Porto Alegre, Brazil.
¹³ Faculty of Public Health, Medical University, Sofia, Bulgaria.
¹⁴ Respiratory Evaluation Sciences Program, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, Canada.
¹⁵ CINEUMO, Respiratory Research Center, Fundación Neumológica Colombiana, Bogotá, Colombia.
¹⁶ Universidad de La Sabana, Chia, Colombia.
¹⁷ Department of Respiratory Medicine and Infectious Diseases, Research Unit, Bispebjerg Hospital, Copenhagen, Denmark.
¹⁸ Department of Pulmonology, University of Tartu and Lung Clinic, Tartu University Hospital, Tartu, Estonia.
¹⁹ Allergy Centre, Tampere University Hospital, Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland.
²⁰ PhyMedExp, Univ Montpellier, CNRS, INSERM, CHU Montpellier, Montpellier, France.
²¹ Department of Pulmonary Medicine, University Medical Center Essen-Ruhrlandklinik, Essen, Germany.
²² Division of Infection, Immunity & Respiratory Medicine, University of Manchester, Manchester, UK.
²³ Allergy Department, 2nd Pediatric Clinic, University of Athens, Athens, Greece.
²⁴ Asthma Outpatient Clinic, National Koranyi Institute for Pulmonology, Budapest, Hungary.
²⁵ Department of Allergy and Respiratory Medicine, University Hospital, Reykjavik, Iceland.
²⁶ Pulmocare Research and Education Foundation, Pune, India.
²⁷ Personalized Medicine, Asthma and Allergy, IRCCS Humanitas Research Hospital, Rozzano, Milan, Italy.
²⁸ Kindai University Hospital, Osakasayama, Japan.
²⁹ Microbiology Department, College of Medicine, Kuwait University, Kuwait, Al-Rashed Allergy Center, Ministry of Health, Kuwait City, Kuwait.
³⁰ Centro de Excelencia en Asma y Alergia, Hospital Médica Sur, Ciudad de México, Mexico.
³¹ University of Groningen, University Medical Center Groningen, Groningen Research Institute for Asthma and COPD (GRIAC), Department of Clinical Pharmacy & Pharmacology, Groningen, the Netherlands.
³² Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway.
³³ Department of Clinical Science, University of Bergen, Bergen, Norway.
³⁴ Division of Internal Medicine Asthma and Allergy, Medical University of Lodz, Lodz, Poland.
³⁵ Pneumology Unit, Hospitais da Universidade de Coimbra, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal.
³⁶ Centre of Pneumology, Faculty of Medicine, University of Coimbra, Coimbra, Portugal.
³⁷ Department of Pulmonology, King Fahad Medical City, Riyadh, Saudi Arabia, Alfaisal University, Riyadh, Saudi Arabia.
³⁸ Division of Pulmonology and Critical Care Medicine, Department of Internal Medicine, Haeundae Paik Hospital, Inje University College of Medicine, Busan, Republic of Korea.
³⁹ Pneumology Service, Biocruces, Cruces University Hospital, Barakaldo, Spain.
⁴⁰ Respiratory Medicine and Allergology, Department of Clinical Sciences, Skåne University Hospital, Lund University, Lund, Sweden.
⁴¹ Division of Pulmonary and Critical Care Medicine, Department of Internal Medicine, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung, Taiwan.
⁴² Department of Internal Medicine, School of Medicine, College of Medicine, Kaohsiung Medical University, Kaohsiung, Taiwan.
⁴³ Rashid Hospital, Dubai Health Authority (DHA), Dubai, United Arab Emirates.
⁴⁴ Centre for Public Health, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast, Belfast, Northern Ireland, UK.
⁴⁵ Lung Division, Royal Brompton & Harefield Hospital, London, UK.
⁴⁶ Division of Allergy and Clinical Immunology, Department of Medicine, National Jewish Health and University of Colorado School of Medicine, Denver and Aurora, CO, USA.
⁴⁷ Centre of Academic Primary Care, Division of Applied Health Sciences, University of Aberdeen, Aberdeen, Scotland, UK.

^# Contributed equally.

Abstract

Aim: The International Severe Asthma Registry (ISAR; http://isaregistries.org/) uses standardised variables to enable multi-country and adequately powered research in severe asthma. This study aims to look at the data countries within ISAR and non-ISAR countries reported collecting that enable global research that support individual country interests.

Methods: Registries were identified by online searches and approaching severe asthma experts. Participating registries provided data collection specifications or confirmed variables collected. Core variables (results from ISAR's Delphi study), steroid-related comorbidity variables, biologic safety variables (serious infection, anaphylaxis, and cancer), COVID-19 variables and additional variables (not belonging to the aforementioned categories) that registries reported collecting were summarised.

Results: Of the 37 registries identified, 26 were ISAR affiliates and 11 non-ISAR affiliates. Twenty-five ISAR-registries and 4 non-ISAR registries reported collecting >90% of the 65 core variables. Twenty-three registries reported collecting all optional steroid-related comorbidity variables. Twenty-nine registries reported collecting all optional safety variables. Ten registries reported collecting COVID-19 variables. Twenty-four registries reported collecting additional variables including data from asthma questionnaires (10 Asthma Control Questionnaire, 20 Asthma Control Test, 11 Asthma Quality of Life Questionnaire, and 4 EuroQol 5-dimension 5-level Questionnaire). Eight registries are linked to databases such as electronic medical records and national claims or disease databases.

Conclusion: Standardised data collection has enabled individual severe asthma registries to collect unified data and increase statistical power for severe asthma research irrespective of ISAR affiliations.

Keywords: Asia-Pacific; COVID-19; Europe; ISAR; International Severe Asthma Registry; Latin America; Middle East; Registry; Severe Asthma; USA; biologics; oral corticosteroids.

Grants and funding

This study was conducted by the Observational and Pragmatic Research Institute (OPRI) Pte Ltd and was funded by Optimum Patient Care Global. No funding was received by the Observational & Pragmatic Research Institute Pte Ltd (OPRI) for its contribution.