International Severe Asthma Registry (ISAR): 2017-2024 Status and Progress Update.

IF 2.5 Q2 RESPIRATORY SYSTEM
Tuberculosis and Respiratory Diseases Pub Date : 2025-04-01 Epub Date: 2025-02-06 DOI:10.4046/trd.2024.0198
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
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引用次数: 0

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.

国际严重哮喘登记(ISAR): 2017-2024状态和进展更新。
国际严重哮喘登记(ISAR)成立于2017年,旨在促进对严重哮喘及其管理的了解,从而改善全球患者护理。作为全球首个成人严重哮喘患者登记系统,ISAR使单个登记系统能够标准化和汇集其数据,创建一个全面、协调的数据集,具有足够的统计能力,以解决关键研究问题和知识差距。如今,ISAR是世界上最大的严重哮喘真实数据库,汇集了来自全球28个国家的近3.5万名患者的数据,并已成为严重哮喘研究的主要贡献者。使用ISAR数据的研究提供了关于严重哮喘的特征、负担和风险因素、现实世界的治疗效果和专科护理障碍的宝贵见解,这些共同为改善哮喘管理提供了信息。除了通过研究改变临床思维外,ISAR还旨在通过提高注册数据质量和严重哮喘护理的举措来推进现实世界的实践。2024年,ISAR完善了重要的研究变量,以提高数据质量,并推出了基于网络的数据采集和报告系统QISAR,该系统将数据收集与临床咨询相结合,并能够在患者、中心和人群层面进行纵向数据跟踪。质量改进的优先事项包括在会诊期间收集标准化数据,通过QISAR跟踪和优化患者旅程,整合初级/二级保健途径,以加快专科重症哮喘管理并促进临床试验招募。ISAR设想,在未来,及时的专家转诊和开始生物治疗可以避免长期全身性使用皮质类固醇,并使更多的患者实现缓解。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
5.30
自引率
0.00%
发文量
42
审稿时长
12 weeks
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