| International Severe Asthma Registry (ISAR): 2017-2024 Status and Progress Update |
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Désirée Larenas-Linnemann, MD, FAAAAI, Dist.Intl.FACAAI1, Chin Kook Rhee, MD, PhD2, Alan Altraja, MD, PhD3, John Busby, PhD4, Trung N. Tran, MD, PhD5, Eileen Wang, MD, MPH6,7, Todor A. Popov, MD, PhD8, Patrick D. Mitchell, MD, FRCPI9, Paul E. Pfeffer, MRCP(UK), PhD10,11, Roy Alton Pleasants, PharmD12,13, Rohit Katial6, Mariko Siyue Koh, MBBS, MRCP (UK), FCCP14,15, Arnaud Bourdin, MD, PhD16, Florence Schleich, MD, PhD17, Jorge Máspero, MD18,19, Mark Hew, MBBS, PhD, FRACP20,21, Matthew J. Peters, MD, PhD22,23, David J. Jackson, FRCP, PhD24, George C. Christoff, MD, MPH, PhD25, Luis Perez-de-Llano, MD, PhD26,27, Ivan Cherrez- Ojeda, MD, MSc, PhD28-31, João A. Fonseca, MD, PhD32, Richard W. Costello, MB, MD, FRCPI33, Carlos A. Torres-Duque, MD, PhD34,35, Piotr Kuna, MD, PhD36, Andrew N. Menzies-Gow, PhD, FRCP37,38, Neda Stjepanovic, MD39, Peter G. Gibson, MBBS, FRACP40,41, Paulo Márcio Pitrez, MD, PhD42, Celine Bergeron, MD, FRCPC, MSc43,44, Celeste M. Porsbjerg, MD, PhD45, Camille Taillé, MD, PhD46, Christian Taube, MD47, Nikolaos G. Papadopoulos, MD,PhD, FRCP48,49, Andriana I. Papaioannou, MD, PhD50, Sundeep Salvi, MD, PhD51, Giorgio Walter Canonica, MD52,53, Enrico Heffler, MD, PhD52,53, Takashi Iwanaga, MD, PhD54, Mona S. Al-Ahmad, MD, FRCPC55,56, Sverre Lehmann, MD, PhD57,58, Riyad Al-Lehebi, MD, FRCPC59,60, Borja G. Cosio, MD, PhD61, Diahn-Warng Perng, MD, PhD62,63, Bassam Mahboub, MD64,65, Liam G. Heaney, MD66, Pujan H. Patel, MD67, Njira Lugogo, MD68, Michael E. Wechsler, MD, MMSc69, Lakmini Bulathsinhala, MPH70,71, Victoria Carter, BSc70,71, Kirsty Fletton, MBChB70,71, David L. Neil70,71, Ghislaine Scelo, PhD70,71, David B. Price, FRCGP70,71,72 |
1Centro de Excelencia en Asma y Alergia, Hospital Médica Sur, Ciudad de México, Mexico
2Division 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
3Department of Pulmonology, University of Tartu and Lung Clinic, Tartu University Hospital, Tartu, Estonia
4Centre for Public Health, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast, Belfast, UK
5BioPharmaceuticals Medical, AstraZeneca, Gaithersburg, MD, USA
6Division of Allergy and Clinical Immunology, Department of Medicine, National Jewish Health, Denver, CO, USA
7Division of Allergy and Clinical Immunology, Department of Medicine, University of Colorado School of Medicine, Aurora, CO, USA
8University Hospital St. Ivan Rilski, Sofia, Bulgaria
9School of Medicine, Trinity College Dublin, Dublin, Ireland
10Department of Respiratory Medicine, Barts Health NHS (National Health Services) Trust, London, UK
11William Harvey Research Institute, Queen Mary University of London, London, UK
12Marsico Lung Institute, University of North Carolina, Chapel Hill, NC, USA
13Division of Pulmonary and Critical Care Medicine, University of Michigan, Ann Arbor, MI, USA
14Department of Respiratory and Critical Care Medicine, Singapore General Hospital, Singapore, Singapore
15Duke-National University, Singapore Medical School, Singapore, Singapore
16PhyMedExp, Univ Montpellier, CNRS (National Center for Scientific Research), INSERM (The National Institute of Health and Medical Research), CHU (Centre Hospitalier Universitaire) Montpellier, Montpellier, France
17Department Pneumology CHU Liege, GIGA I3 Research Group Exercise Physiology Lab, University of Liege, Liege, Belgium
18Clinical Research for Allergy and Respiratory Medicine, CIDEA Foundation, Buenos Aires, Argentina
19University Career of Specialists in Allergy and Clinical Immunology at the Buenos Aires University School of Medicine, Buenos Aires, Argentina
20Allergy, Asthma & Clinical Immunology Service, Alfred Health, Melbourne, Victoria, Australia
21Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
22Department of Thoracic Medicine, Concord Hospital, Sydney, New South Wales, Australia
23Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, New South Wales, Australia
24Guy's Severe Asthma Centre, School of Immunology & Microbial Sciences, King's College London, London, UK
25Faculty of Public Health, Medical University, Sofia, Bulgaria
26Pneumology Service, Lucus Augusti University Hospital, EOXI Lugo, Monforte, Cervo, Lugo, Spain
27Department of Psychiatry, Radiology, Public Health, Nursery and Medicine, University of Santiago de Compostela, Santiago de Compostela, Spain
28Universidad Espiritu Santo, Samborodón, Ecuador
29The Institute of Allergology, Charité- Universitätsmedizin Berlin, Corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany
30The Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Allergology and Immunology, Berlin, Germany
31Respiralab Research Group, Guayaquil, Ecuador
32CINTESIS@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
33Clinical Research Centre, Smurfit Building Beaumont Hospital, Department of Respiratory Medicine, RCSI (Royal College of Surgeons Ireland), Dublin, Ireland
34CINEUMO (Centro Internacional de Investigación en Neumología), Respiratory Research Center, Fundación Neumológica Colombiana, Bogotá, Colombia
35Doctoral Biosciences, Universidad de La Sabana, Chia, Colombia
36Division of Internal Medicine Asthma and Allergy, Medical University of Lodz, Lodz, Poland
37BioPharmaceuticals Medical, AstraZeneca, Cambridge, UK
38Lung Division, Royal Brompton & Harefield Hospital, London, UK
39BioPharmaceuticals Medical, AstraZeneca, Gothenburg, Sweden
40Australian Severe Asthma Network, Priority Research Centre for Healthy Lungs, University of Newcastle, Newcastle, New South Wales, Australia
41Hunter Medical Research Institute, Department of Respiratory and Sleep Medicine, John Hunter Hospital, New Lambton Heights, New South Wales, Australia
42Pulmonology Division, Hospital Santa Casa de Porto Alegre, Porto Alegre, Brazil
43Department of Medicine, Centre for Lung Health, Vancouver General Hospital, Vancouver, British Columbia, Canada
44Department of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada
45Department of Respiratory Medicine and Infectious Diseases, Research Unit, Bispebjerg Hospital, Copenhagen, Denmark
46Department of Respiratory Diseases, Bichat Hospital, AP-HP (L'Assistance Publique – Hôpitaux de Paris), Nord-Université Paris Cité; Paris, France
47Department of Pulmonary Medicine, University Medical Center Essen-Ruhrlandklinik, Essen, Germany
48Division of Infection, Immunity & Respiratory Medicine, University of Manchester, Manchester, UK
49Allergy Department, 2nd Pediatric Clinic, University of Athens, Athens, Greece
502nd Respiratory Medicine Department, National and Kapodistrian University of Athens Medical School, Attikon University Hospital, Athens, Greece
51Pulmocare Research and Education Foundation, Pune, India
52Personalized Medicine, Asthma and Allergy, IRCCS Humanitas Research Hospital, Rozzano, Italy
53Department of Biomedical Sciences, Humanitas University, Pieve Emanuele, Milan, Italy
54Sleep Medicine Centre, Kindai University Hospital, Osakasayama, Japan
55Microbiology Department, College of Medicine, Kuwait University, Kuwait City, Kuwait
56Al-Rashed Allergy Center, Ministry of Health, Kuwait City, Kuwait
57Section of Thoracic Medicine, Department of Clinical Science, University of Bergen, Bergen, Norway
58Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway
59Department of Pulmonology, King Fahad Medical City, Riyadh, Saudi Arabia
60College of Medicine, Alfaisal University, Riyadh, Saudi Arabia
61Son Espases University Hospital-IdISBa (Institut d’Investigació Sanitària Illes Balears)-Ciberes, Mallorca, Spain
62School of Medicine, National Yang Ming Chiao Tung University, Taipei, Taiwan
63Department of Chest Medicine, Taipei Veterans General Hospital, Taipei, Taiwan
64Rashid Hospital, Dubai Health (DH), Dubai, United Arab Emirates
65College of Medicine, University of Sharjah, Sharjah, United Arab Emirates
66Wellcome-Wolfson Institute for Experimental Medicine, Queen’s University Belfast, Belfast, UK
67Respiratory Medicine, Royal Brompton Hospital, London, UK
68Department of Medicine, Division of Pulmonary and Critical Care Medicine, University of Michigan, Ann Arbor, MI, USA
69National Jewish Health Cohen Family Asthma Institute, Department of Medicine, National Jewish Health, Denver, CO, USA
70Observational and Pragmatic Research Institute, Singapore, Singapore
71Optimum Patient Care Global, Cambridge, UK
72Centre of Academic Primary Care, Division of Applied Health Sciences, University of Aberdeen, Aberdeen, UK |
Correspondence:
David B. Price, Tel: +65 3105 1489,
Email: dprice@opri.sg
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Received: 23 December 2024 • Accepted: 5 February 2025 |
| Abstract |
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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. |
| Key Words:
International Severe Asthma Registry (ISAR), Optimum Patient Care Global, Core variables, Real-world data, Quality improvement, Delphi consensus |
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