CHEST Guidelines-International-Severe-Asthma-Registry_2019

International-Severe-Asthma-Registry_2019_chest

Pdf Summary

The International Severe Asthma Registry (ISAR) is the first global registry collecting comprehensive data on severe asthma from adults worldwide. It aims to address the limitations of current national and regional asthma registries, which often have restricted data interoperability and limited statistical power to answer significant research questions due to their independent operations. ISAR consolidates data from existing and new national registries, where participating countries retain data ownership while sharing de-identified, standardized data for ethical research purposes.<br /><br />ISAR gathers a core set of high-quality, patient-level, anonymous, longitudinal data. It aims to improve our understanding of severe asthma through robust statistical analysis and comparisons across regions and nations using uniform data collection protocols. This centralized approach helps to overcome challenges such as differing definitions of severe asthma and variabilities in healthcare access globally.<br /><br />Severe asthma affects a small percentage of asthma patients but incurs high costs and presents significant treatment challenges. ISAR's international collaboration involves multiple stakeholders, including healthcare providers, researchers, and industry partners. The registry benefits various parties: physicians gain insights into severe asthma presentations and treatment predictors, patients understand the progression of their disease better, and researchers receive data conducive to advancing clinical guidelines and evidence-based practices.<br /><br />The registry is overseen by various governing bodies to maintain ethical standards and scientific integrity. It receives support from the Observational and Pragmatic Research Institute, Optimum Patient Care Global, and AstraZeneca.<br /><br />ISAR's global scope, with partners across Europe, the Americas, Asia-Pacific, and the Middle East, continues to expand. By establishing a cohesive severe asthma dataset, ISAR provides a platform for crucial research into personalized medicine, treatment effectiveness, safety, and outcomes in diverse patient populations worldwide. The initiative ultimately strives to enhance patient care and inform policy and clinical practice standards.

Keywords

International Severe Asthma Registry

global registry

severe asthma

data interoperability

longitudinal data

statistical analysis

international collaboration

personalized medicine

healthcare access

ethical research