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Development of the International Severe Asthma Registry (ISAR)

Published online: September 1, 2018

Severe asthma represents a small subgroup of asthma with symptoms that remain inadequately controlled even with the highest level of treatment. Patient registries are important tools to better understand, manage, and treat diseases. However, until recently, severe asthma registries comprise of only local registries with little comparability.

The International Severe Asthma Registry (ISAR) is the first global effort for a centralized severe asthma registry with standardized data collection operating across a growing number of participating countries. In an article published recently in The Journal of Allergy and Clinical Immunology: In Practice, Bulathsinhala and colleagues described the modified Delphi exercise that determined the common data collection model for all countries participating in the ISAR.

A panel of 27 experts in the field of severe asthma from 16 countries voted for the final list of data fields to be collected across participating countries. After three rounds of voting, the panel reached a consensus for 95 data fields which include patient demographics, medical history, and clinical characteristics. Clinician reported fields, such as treatment adherence and management strategies, were also prioritized.

This is the first global attempt to generate an international severe asthma registry with a standard data capture to enable data interoperability across borders.

The Journal of Allergy and Clinical Immunology: In Practice is an official journal of the AAAAI, focusing on practical information for the practicing clinician.

Development of the International Severe Asthma Registry (ISAR): a modified Delphi study
By Lakmini Bulathsinhala, MPH, Nevaashni Eleangovan, BSC, Liam G. Heaney, MD, Andrew Menzies-Gow, PhD, FRCP, Peter G. Gibson, MBBS FRACP, Matthew Peters, PhD, MD, Mark Hew, MBBS, PhD, DIC, Job FM. van Boven, PharmD, PhD, Lauri Lehtimäki, MD, Eric van Ganse, MD, PhD, FRCP, Manon Belhassen, PhD, Erin Harvey, PhD, Luis Perez de Llano, MD, PhD, Anke H. Maitland-van der Zee, PharmD, PhD, Nikolaos Papadopoulos, MD, PhD, J. Mark FitzGerald, MB, MD, FRCPI, FERS, FRCPC, FACP, FACCP, Celeste Porsbjerg, MD, PhD, G. Walter Canonica, MD, FAAAAI, Vibeke Backer, MD, DMSci, Chin Kook Rhee, MD, PhD, Katia Verhamme, MD, PhD, Roland Buhl, MD, Borja G. Cosio, MD, PhD, Victoria Carter, BSc, Chris Price, LL.B, Thao Le, BComm, Martina Stagno d’Alcontres, PhD, Gokul Gopalan, MD, Trung Tran, MD, PhD, David Price, FRCGP