Asia-Pacific; COVID-19; Europe; ISAR; International Severe Asthma Registry; Latin America; Middle East; Registry; Severe Asthma; USA; biologics; oral corticosteroids
Abstract :
[en] 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.
Disciplines :
Cardiovascular & respiratory systems
Author, co-author :
Cushen, Breda; Department of Respiratory Medicine, Beaumont Hospital, Dublin, Ireland.
Koh, Mariko Siyue; Department of Respiratory and Critical Care Medicine, Singapore General Hospital, Singapore, Singapore.
Tran, Trung N; AstraZeneca, Gaithersburg, MD, USA.
Martin, Neil; AstraZeneca, Gaithersburg, MD, USA. ; Department of Respiratory Medicine, University of Leicester, Leicester, UK.
Murray, Ruth; Optimum Patient Care Global, Cambridge, UK.
Uthaman, Thendral; Observational Pragmatic Research Institute, Singapore, Singapore.
Goh, Celine Yun Yi ; Optimum Patient Care Global, Cambridge, UK. ; Observational Pragmatic Research Institute, Singapore, Singapore.
Vella, Rebecca ; Optimum Patient Care, Brisbane, Queensland, Australia.
Eleangovan, Neva; Optimum Patient Care Global, Cambridge, UK. ; Observational Pragmatic Research Institute, Singapore, Singapore.
Bulathsinhala, Lakmini; Optimum Patient Care Global, Cambridge, UK. ; Observational Pragmatic Research Institute, Singapore, Singapore.
Maspero, Jorge F; Clinical Research for Allergy and Respiratory Medicine, CIDEA Foundation, Buenos Aires, Argentina. ; University Career of Specialists in Allergy and Clinical Immunology at the Buenos Aires University School of Medicine, Buenos Aires, Argentina.
Peters, Matthew J; Department of Thoracic Medicine, Concord Hospital, Sydney, Australia.
Schleich, FLorence ; Centre Hospitalier Universitaire de Liège - CHU > > Service de pneumologie - allergologie
Pitrez, Paulo; Pulmonology Division, Hospital Santa Casa de Porto Alegre, Porto Alegre, Brazil.
Christoff, George ; Faculty of Public Health, Medical University, Sofia, Bulgaria.
Sadatsafavi, Mohsen ; Respiratory Evaluation Sciences Program, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, Canada.
Torres-Duque, Carlos A ; CINEUMO, Respiratory Research Center, Fundación Neumológica Colombiana, Bogotá, Colombia. ; Universidad de La Sabana, Chia, Colombia.
Porsbjerg, Celeste; Department of Respiratory Medicine and Infectious Diseases, Research Unit, Bispebjerg Hospital, Copenhagen, Denmark.
Altraja, Alan; Department of Pulmonology, University of Tartu and Lung Clinic, Tartu University Hospital, Tartu, Estonia.
Lehtimäki, Lauri ; Allergy Centre, Tampere University Hospital, Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland.
Taube, Christian; Department of Pulmonary Medicine, University Medical Center Essen-Ruhrlandklinik, Essen, Germany.
Papadopoulos, Nikolaos G ; Division of Infection, Immunity & Respiratory Medicine, University of Manchester, Manchester, UK. ; Allergy Department, 2nd Pediatric Clinic, University of Athens, Athens, Greece.
Zsuzsanna, Csoma; Asthma Outpatient Clinic, National Koranyi Institute for Pulmonology, Budapest, Hungary.
Björnsdóttir, Unnur; Department of Allergy and Respiratory Medicine, University Hospital, Reykjavik, Iceland.
Salvi, Sundeep; Pulmocare Research and Education Foundation, Pune, India.
Heffler, Enrico; Personalized Medicine, Asthma and Allergy, IRCCS Humanitas Research Hospital, Rozzano, Milan, Italy.
Iwanaga, Takashi ; Kindai University Hospital, Osakasayama, Japan.
Al-Ahmad, Mona ; Microbiology Department, College of Medicine, Kuwait University, Kuwait, Al-Rashed Allergy Center, Ministry of Health, Kuwait City, Kuwait.
Larenas-Linnemann, Désirée ; Centro de Excelencia en Asma y Alergia, Hospital Médica Sur, Ciudad de México, Mexico.
van Boven, Job F M ; University of Groningen, University Medical Center Groningen, Groningen Research Institute for Asthma and COPD (GRIAC), Department of Clinical Pharmacy & Pharmacology, Groningen, the Netherlands.
Aarli, Bernt Bøgvald; Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway. ; Department of Clinical Science, University of Bergen, Bergen, Norway.
Kuna, Piotr; Division of Internal Medicine Asthma and Allergy, Medical University of Lodz, Lodz, Poland.
Loureiro, Cláudia Chaves; Pneumology Unit, Hospitais da Universidade de Coimbra, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal. ; Centre of Pneumology, Faculty of Medicine, University of Coimbra, Coimbra, Portugal.
Al-Lehebi, Riyad ; Department of Pulmonology, King Fahad Medical City, Riyadh, Saudi Arabia, Alfaisal University, Riyadh, Saudi Arabia.
Lee, Jae Ha ; Division of Pulmonology and Critical Care Medicine, Department of Internal Medicine, Haeundae Paik Hospital, Inje University College of Medicine, Busan, Republic of Korea.
Marina, Nuria; Pneumology Service, Biocruces, Cruces University Hospital, Barakaldo, Spain.
Bjermer, Leif ; Respiratory Medicine and Allergology, Department of Clinical Sciences, Skåne University Hospital, Lund University, Lund, Sweden.
Sheu, Chau-Chyun ; Division of Pulmonary and Critical Care Medicine, Department of Internal Medicine, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung, Taiwan. ; Department of Internal Medicine, School of Medicine, College of Medicine, Kaohsiung Medical University, Kaohsiung, Taiwan.
Mahboub, Bassam ; Rashid Hospital, Dubai Health Authority (DHA), Dubai, United Arab Emirates.
Busby, John; Centre for Public Health, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast, Belfast, Northern Ireland, UK.
Wang, Eileen; Division of Allergy and Clinical Immunology, Department of Medicine, National Jewish Health and University of Colorado School of Medicine, Denver and Aurora, CO, USA.
Price, David B ; Optimum Patient Care Global, Cambridge, UK. ; Observational Pragmatic Research Institute, Singapore, Singapore. ; Centre of Academic Primary Care, Division of Applied Health Sciences, University of Aberdeen, Aberdeen, Scotland, UK.
