Tuberculosis and Respiratory Diseases (Apr 2025)
International Severe Asthma Registry (ISAR): 2017–2024 Status and Progress Update
- Désirée Larenas-Linnemann,
- Chin Kook Rhee,
- Alan Altraja,
- John Busby,
- Trung N. Tran,
- Eileen Wang,
- Todor A. Popov,
- Patrick D. Mitchell,
- Paul E. Pfeffer,
- Roy Alton Pleasants,
- Rohit Katial,
- Mariko Siyue Koh,
- Arnaud Bourdin,
- Florence Schleich,
- Jorge Máspero,
- Mark Hew,
- Matthew J. Peters,
- David J. Jackson,
- George C. Christoff,
- Luis Perez-de-Llano,
- Ivan Cherrez-Ojeda,
- João A. Fonseca,
- Richard W. Costello,
- Carlos A. Torres-Duque,
- Piotr Kuna,
- Andrew N. Menzies-Gow,
- Neda Stjepanovic,
- Peter G. Gibson,
- Paulo Márcio Pitrez,
- Celine Bergeron,
- Celeste M. Porsbjerg,
- Camille Taillé,
- Christian Taube,
- Nikolaos G. Papadopoulos,
- Andriana I. Papaioannou,
- Sundeep Salvi,
- Giorgio Walter Canonica,
- Enrico Heffler,
- Takashi Iwanaga,
- Mona S. Al-Ahmad,
- Sverre Lehmann,
- Riyad Al-Lehebi,
- Borja G. Cosio,
- Diahn-Warng Perng,
- Bassam Mahboub,
- Liam G. Heaney,
- Pujan H. Patel,
- Njira Lugogo,
- Michael E. Wechsler,
- Lakmini Bulathsinhala,
- Victoria Carter,
- Kirsty Fletton,
- David L. Neil,
- Ghislaine Scelo,
- David B. Price
Affiliations
- Désirée Larenas-Linnemann
- Center of Excellence in Asthma and Allergy, Médica Sur Hospital, Mexico City, Mexico
- Chin Kook Rhee
- 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, Republic of Korea
- Alan Altraja
- Department of Pulmonology, Lung Clinic, Tartu University Hospital, University of Tartu, Tartu, Estonia
- John Busby
- Centre for Public Health, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast, Belfast, UK
- Trung N. Tran
- BioPharmaceuticals Medical, AstraZeneca, Gaithersburg, MD, USA
- Eileen Wang
- Division of Allergy and Clinical Immunology, Department of Medicine, National Jewish Health, Denver, CO, USA
- Todor A. Popov
- University Hospital St. Ivan Rilski, Sofia, Bulgaria
- Patrick D. Mitchell
- School of Medicine, Trinity College Dublin, Dublin, Ireland
- Paul E. Pfeffer
- Department of Respiratory Medicine, Barts Health NHS (National Health Services) Trust, London, UK
- Roy Alton Pleasants
- Marsico Lung Institute, University of North Carolina, Chapel Hill, NC, USA
- Rohit Katial
- Division of Allergy and Clinical Immunology, Department of Medicine, National Jewish Health, Denver, CO, USA
- Mariko Siyue Koh
- Department of Respiratory and Critical Care Medicine, Singapore General Hospital, Singapore
- Arnaud Bourdin
- PhyMedExp, University of Montpellier, CNRS (National Center for Scientific Research), INSERM (The National Institute of Health and Medical Research), CHU (Centre Hospitalier Universitaire), Montpellier, France
- Florence Schleich
- Department of Pneumology, University Hospital of Liège, GIGA I3 Research Group, Exercise Physiology Lab, Department of Physical Activity and Rehabilitation Sciences, University of Liège, Liège, Belgium
- Jorge Máspero
- Clinical Research for Allergy and Respiratory Medicine, CIDEA Foundation, Buenos Aires, Argentina
- Mark Hew
- Allergy, Asthma & Clinical Immunology Service, Alfred Health, Melbourne, VIC, Australia
- Matthew J. Peters
- Department of Thoracic Medicine, Concord Hospital, Sydney, NSW, Australia
- David J. Jackson
- Guy’s Severe Asthma Centre, School of Immunology & Microbial Sciences, King’s College London, London, UK
- George C. Christoff
- Faculty of Public Health, Medical University, Sofia, Bulgaria
- Luis Perez-de-Llano
- Pneumology Service, Lucus Augusti University Hospital, EOXI Lugo, Monforte, Cervo, Spain
- Ivan Cherrez-Ojeda
- Holy Spirit University, Samborondon, Ecuador
- João A. Fonseca
- 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
- Richard W. Costello
- Clinical Research Centre, Smurfit Building Beaumont Hospital, Department of Respiratory Medicine, RCSI (Royal College of Surgeons Ireland), Dublin, Ireland
- Carlos A. Torres-Duque
- CINEUMO (Centro Internacional de Investigación en Neumología), Respiratory Research Center, Fundación Neumológica Colombiana, Bogotá, Colombia
- Piotr Kuna
- Division of Internal Medicine Asthma and Allergy, Medical University of Lodz, Lodz, Poland
- Andrew N. Menzies-Gow
- BioPharmaceuticals Medical, AstraZeneca, Cambridge, UK
- Neda Stjepanovic
- BioPharmaceuticals Medical, AstraZeneca, Gothenburg, Sweden
- Peter G. Gibson
- Australian Severe Asthma Network, Priority Research Centre for Healthy Lungs, University of Newcastle, Newcastle, NSW, Australia
- Paulo Márcio Pitrez
- Pulmonology Division, Hospital Santa Casa de Porto Alegre, Porto Alegre, Brazil
- Celine Bergeron
- Department of Medicine, Centre for Lung Health, Vancouver General Hospital, Vancouver, BC, Canada
- Celeste M. Porsbjerg
- Department of Respiratory Medicine and Infectious Diseases, Research Unit, Bispebjerg Hospital, Copenhagen, Denmark
- Camille Taillé
- Department of Respiratory Diseases, Bichat Hospital, AP-HP (L'Assistance Publique – Hôpitaux de Paris), Nord-Université Paris Cité, Paris, France
- Christian Taube
- Department of Pulmonary Medicine, University Medical Center Essen-Ruhrlandklinik, Essen, Germany
- Nikolaos G. Papadopoulos
- Division of Infection, Immunity & Respiratory Medicine, University of Manchester, Manchester, UK
- Andriana I. Papaioannou
- 2nd Respiratory Medicine Department, National and Kapodistrian University of Athens Medical School, Attikon University Hospital, Athens, Greece
- Sundeep Salvi
- Pulmocare Research and Education Foundation, Pune, India
- Giorgio Walter Canonica
- Personalized Medicine, Asthma and Allergy, IRCCS Humanitas Research Hospital, Rozzano, Italy
- Enrico Heffler
- Personalized Medicine, Asthma and Allergy, IRCCS Humanitas Research Hospital, Rozzano, Italy
- Takashi Iwanaga
- Sleep Medicine Centre, Kindai University Hospital, Osakasayama, Japan
- Mona S. Al-Ahmad
- Microbiology Department, College of Medicine, Kuwait University, Kuwait City, Kuwait
- Sverre Lehmann
- Section of Thoracic Medicine, Department of Clinical Science, University of Bergen, Bergen, Norway
- Riyad Al-Lehebi
- Department of Pulmonology, King Fahad Medical City, Riyadh, Saudi Arabia
- Borja G. Cosio
- Son Espases University Hospital-IdISBa (Institut d’Investigació Sanitària Illes Balears)-Ciberes, Mallorca, Spain
- Diahn-Warng Perng
- School of Medicine, National Yang Ming Chiao Tung University, Taipei, Taiwan
- Bassam Mahboub
- Rashid Hospital, Dubai Health (DH), Dubai, United Arab Emirates
- Liam G. Heaney
- Wellcome-Wolfson Institute for Experimental Medicine, Queen’s University Belfast, Belfast, UK
- Pujan H. Patel
- Respiratory Medicine, Royal Brompton Hospital, London, UK
- Njira Lugogo
- Division of Pulmonary and Critical Care Medicine, Department of Medicine, University of Michigan, Ann Arbor, MI, USA
- Michael E. Wechsler
- Department of Medicine, National Jewish Health Cohen Family Asthma Institute, National Jewish Health, Denver, CO, USA
- Lakmini Bulathsinhala
- Observational and Pragmatic Research Institute, Singapore, Singapore
- Victoria Carter
- Observational and Pragmatic Research Institute, Singapore, Singapore
- Kirsty Fletton
- Observational and Pragmatic Research Institute, Singapore, Singapore
- David L. Neil
- Observational and Pragmatic Research Institute, Singapore, Singapore
- Ghislaine Scelo
- Observational and Pragmatic Research Institute, Singapore, Singapore
- David B. Price
- Observational and Pragmatic Research Institute, Singapore, Singapore
- DOI
- https://doi.org/10.4046/trd.2024.0198
- Journal volume & issue
-
Vol. 88,
no. 2
pp. 193 – 215
Abstract
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 a web-based data acquisition and reporting system (QISAR), 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.
Keywords
- international severe asthma registry (isar)
- optimum patient care global
- core variables
- real-world data
- quality improvement
- delphi consensus
