Core variables; Delphi consensus; International Severe Asthma Registry (ISAR); Optimum Patient Care Global; Quality improvement; Real-world data
Abstract :
[en] The International Severe Asthma Registry (ISAR) was established in 2017 to advance the understanding of severe asthma and its management, thereby improving patient care worldwide. As the first global registry for adults with severe asthma, ISAR enabled individual registries to standardize and pool their data, creating a comprehensive, harmonized dataset with sufficient statistical power to address key research questions and knowledge gaps. Today, ISAR is the largest repository of real-world data on severe asthma, curating data on nearly 35,000 patients from 28 countries worldwide, and has become a leading contributor to severe asthma research. Research using ISAR data has provided valuable insights on the characteristics of severe asthma, its burdens and risk factors, real-world treatment effectiveness, and barriers to specialist care, which are collectively informing improved asthma management. Besides changing clinical thinking via research, ISAR aims to advance real-world practice through initiatives that improve registry data quality and severe asthma care. In 2024, ISAR refined essential research variables to enhance data quality and launched QISAR, a web-based data acquisition and reporting system, which integrates data collection with clinical consultations and enables longitudinal data tracking at patient, center, and population levels. Quality improvement priorities include collecting standardized data during consultations and tracking and optimizing patient journeys via QISAR and integrating primary/secondary care pathways to expedite specialist severe asthma management and facilitate clinical trial recruitment. ISAR envisions a future in which timely specialist referral and initiation of biologic therapy can obviate long-term systemic corticosteroid use and enable more patients to achieve remission.
Disciplines :
Cardiovascular & respiratory systems
Author, co-author :
Larenas-Linnemann, Désirée ; Centro de Excelencia en Asma y Alergia, Hospital Médica Sur, Ciudad de México, Mexico
Rhee, Chin Kook ; Division of Pulmonary and Critical Care Medicine, Department of Internal Medicine, Seoul St. Mary's Hospital, College of Medicine, The Catholic University of Korea, Seoul, South Korea
Altraja, Alan ; Department of Pulmonology, University of Tartu and Lung Clinic, Tartu University Hospital, Tartu, Estonia
Busby, John ; Centre for Public Health, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast, Belfast, UK
Tran, Trung N ; BioPharmaceuticals Medical, AstraZeneca, Gaithersburg, MD, USA
Wang, Eileen ; Division of Allergy and Clinical Immunology, Department of Medicine, National Jewish Health, Denver, CO, USA ; Division of Allergy and Clinical Immunology, Department of Medicine, University of Colorado School of Medicine, Aurora, CO, USA
Popov, Todor A ; University Hospital St. Ivan Rilski, Sofia, Bulgaria
Mitchell, Patrick D ; School of Medicine, Trinity College Dublin, Dublin, Ireland
Pfeffer, Paul E ; Department of Respiratory Medicine, Barts Health NHS (National Health Services) Trust, London, UK ; William Harvey Research Institute, Queen Mary University of London, London, UK
Pleasants, Roy Alton ; Marsico Lung Institute, University of North Carolina, Chapel Hill, NC, USA ; Division of Pulmonary and Critical Care Medicine, University of Michigan, Ann Arbor, MI, USA
Katial, Rohit ; Division of Allergy and Clinical Immunology, Department of Medicine, National Jewish Health, Denver, CO, USA
Koh, Mariko Siyue ; Department of Respiratory and Critical Care Medicine, Singapore General Hospital, Singapore, Singapore ; Duke-National University, Singapore Medical School, Singapore, Singapore
Bourdin, Arnaud ; PhyMedExp, Univ Montpellier, CNRS (National Center for Scientific Research), INSERM (The National Institute of Health and Medical Research), CHU (Centre Hospitalier Universitaire) Montpellier, Montpellier, France
Schleich, Florence ; Université de Liège - ULiège > Département des Sciences de l'activité physique et de la réadaptation > Physiologie humaine et physiologie de l'effort physique
Máspero, Jorge ; 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
Hew, Mark ; Allergy, Asthma & Clinical Immunology Service, Alfred Health, Melbourne, Victoria, Australia ; Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
Peters, Matthew J ; Department of Thoracic Medicine, Concord Hospital, Sydney, New South Wales, Australia ; Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia
Jackson, David J ; Guy's Severe Asthma Centre, School of Immunology & Microbial Sciences, King's College London, London, UK
Christoff, George C ; Faculty of Public Health, Medical University, Sofia, Bulgaria
Perez-de-Llano, Luis ; Pneumology Service, Lucus Augusti University Hospital, EOXI Lugo, Monforte, Cervo, Lugo, Spain ; Department of Psychiatry, Radiology, Public Health, Nursery and Medicine, University of Santiago de Compostela, Santiago de Compostela, Spain
Cherrez-Ojeda, Ivan; Universidad Espiritu Santo, Samborodón, Ecuador ; The Institute of Allergology, Charité- Universitätsmedizin Berlin, Corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany ; The Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Allergology and Immunology, Berlin, Germany ; Respiralab Research Group, Guayaquil, Ecuador
Fonseca, João A ; CINTESIS@RISE (Center for Health Technology and Services Research at Health Research Network), MEDCIDS (Departamento Medicina da Comunidade, Informação e Decisão em Saúde/Department of Community Medicine, Information and Health Decisions), Faculty of Medicine of the University of Porto, Porto, Portugal
Costello, Richard W ; Clinical Research Centre, Smurfit Building Beaumont Hospital, Department of Respiratory Medicine, RCSI (Royal College of Surgeons Ireland), Dublin, Ireland
Torres-Duque, Carlos A ; CINEUMO (Centro Internacional de Investigación en Neumología), Respiratory Research Center, Fundación Neumológica Colombiana, Bogotá, Colombia ; Doctoral Biosciences, Universidad de La Sabana, Chia, Colombia
Kuna, Piotr ; Division of Internal Medicine Asthma and Allergy, Medical University of Lodz, Lodz, Poland
Menzies-Gow, Andrew N ; BioPharmaceuticals Medical, AstraZeneca, Cambridge, UK ; Lung Division, Royal Brompton & Harefield Hospital, London, UK
Stjepanovic, Neda; BioPharmaceuticals Medical, AstraZeneca, Gothenburg, Sweden
Gibson, Peter G ; Australian Severe Asthma Network, Priority Research Centre for Healthy Lungs, University of Newcastle, Newcastle, New South Wales, Australia ; Hunter Medical Research Institute, Department of Respiratory and Sleep Medicine, John Hunter Hospital, New Lambton Heights, New South Wales, Australia
Pitrez, Paulo Márcio ; Pulmonology Division, Hospital Santa Casa de Porto Alegre, Porto Alegre, Brazil
Bergeron, Celine ; Department of Medicine, Centre for Lung Health, Vancouver General Hospital, Vancouver, British Columbia, Canada ; Department of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada
Porsbjerg, Celeste M ; Department of Respiratory Medicine and Infectious Diseases, Research Unit, Bispebjerg Hospital, Copenhagen, Denmark
Taillé, Camille; Department of Respiratory Diseases, Bichat Hospital, AP-HP (L'Assistance Publique - Hôpitaux de Paris), Nord-Université Paris Cité, Paris, France
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
Papaioannou, Andriana I ; 2nd Respiratory Medicine Department, National and Kapodistrian University of Athens Medical School, Attikon University Hospital, Athens, Greece
Salvi, Sundeep ; Pulmocare Research and Education Foundation, Pune, India
Canonica, Giorgio Walter ; Personalized Medicine, Asthma and Allergy, IRCCS Humanitas Research Hospital, Rozzano, Italy ; Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, Milan, Italy
Heffler, Enrico ; Personalized Medicine, Asthma and Allergy, IRCCS Humanitas Research Hospital, Rozzano, Italy ; Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, Milan, Italy
Iwanaga, Takashi ; Sleep Medicine Centre, Kindai University Hospital, Osakasayama, Japan
Al-Ahmad, Mona S ; Microbiology Department, College of Medicine, Kuwait University, Kuwait City, Kuwait ; Al-Rashed Allergy Center, Ministry of Health, Kuwait City, Kuwait
Lehmann, Sverre ; Section of Thoracic Medicine, Department of Clinical Science, University of Bergen, Bergen, Norway ; Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway
Al-Lehebi, Riyad ; Department of Pulmonology, King Fahad Medical City, Riyadh, Saudi Arabia ; College of Medicine, Alfaisal University, Riyadh, Saudi Arabia
Cosio, Borja G ; Son Espases University Hospital-IdISBa (Institut d'Investigació Sanitària Illes Balears)-Ciberes, Mallorca, Spain
Perng, Diahn-Warng ; School of Medicine, National Yang Ming Chiao Tung University, Taipei, Taiwan ; Department of Chest Medicine, Taipei Veterans General Hospital, Taipei, Taiwan
Mahboub, Bassam ; Rashid Hospital, Dubai Health (DH), Dubai, United Arab Emirates ; College of Medicine, University of Sharjah, Sharjah, United Arab Emirates
Heaney, Liam G ; Wellcome-Wolfson Institute for Experimental Medicine, Queen's University Belfast, Belfast, UK
Patel, Pujan H; Respiratory Medicine, Royal Brompton Hospital, London, UK
Lugogo, Njira ; Department of Medicine, Division of Pulmonary and Critical Care Medicine, University of Michigan, Ann Arbor, MI, USA
Wechsler, Michael E ; National Jewish Health Cohen Family Asthma Institute, Department of Medicine, National Jewish Health, Denver, CO, USA
Bulathsinhala, Lakmini ; Observational and Pragmatic Research Institute, Singapore, Singapore ; Optimum Patient Care Global, Cambridge, UK
Carter, Victoria ; Observational and Pragmatic Research Institute, Singapore, Singapore ; Optimum Patient Care Global, Cambridge, UK
Fletton, Kirsty ; Observational and Pragmatic Research Institute, Singapore, Singapore ; Optimum Patient Care Global, Cambridge, UK
Neil, David L ; Observational and Pragmatic Research Institute, Singapore, Singapore ; Optimum Patient Care Global, Cambridge, UK
Scelo, Ghislaine ; Observational and Pragmatic Research Institute, Singapore, Singapore ; Optimum Patient Care Global, Cambridge, UK
Price, David B ; Observational and Pragmatic Research Institute, Singapore, Singapore ; Optimum Patient Care Global, Cambridge, UK ; Centre of Academic Primary Care, Division of Applied Health Sciences, University of Aberdeen, Aberdeen, UK
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