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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-LlanoIvan 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*

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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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.

Original languageEnglish
Pages (from-to)193-215
Number of pages23
JournalTuberculosis and Respiratory Diseases
Volume88
Issue number2
DOIs
Publication statusPublished - Apr 2025

Bibliographical note

Copyright 2025 The Korean Academy of Tuberculosis and Respiratory Diseases. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

  • Core Variables
  • Delphi Consensus
  • International Severe Asthma Registry (ISAR)
  • Optimum Patient Care Global
  • Quality Improvement
  • Real-World Data

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