TY - JOUR

T1 - Development of the International Severe Asthma Registry (ISAR)

T2 - A Modified Delphi Study

AU - Bulathsinhala, Lakmini

AU - Eleangovan, Nevaashni

AU - Heaney, Liam G

AU - Menzies-Gow, Andrew

AU - Gibson, Peter G

AU - Peters, Matthew

AU - Hew, Mark

AU - van Boven, Job F M

AU - Lehtimäki, Lauri

AU - van Ganse, Eric

AU - Belhassen, Manon

AU - Harvey, Erin S

AU - Perez de Llano, Luis

AU - Maitland-van der Zee, Anke H

AU - Papadopoulos, Nikolaos G

AU - FitzGerald, J Mark

AU - Porsbjerg, Celeste

AU - Canonica, G Walter

AU - Backer, Vibeke

AU - Rhee, Chin Kook

AU - Verhamme, Katia M C

AU - Buhl, Roland

AU - Cosio, Borja G

AU - Carter, Victoria

AU - Price, Chris

AU - Le, Thao

AU - Stagno d'Alcontres, Martina

AU - Gopalan, Gokul

AU - Tran, Trung N

AU - Price, David

N1 - Copyright © 2018 American Academy of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.

PY - 2019

Y1 - 2019

N2 - BACKGROUND: The lack of centralized data on severe asthma has resulted in a scarcity of information about the disease and its management. The development of a common data collection tool for the International Severe Asthma Registry (ISAR) will enable standardized data collection, subsequently enabling data interoperability.OBJECTIVES: To create a standardized list of variables for the first international registry for severe asthma via expert consensus.METHODS: A modified Delphi process was used to reach consensus on a minimum set of variables to capture in ISAR: the core variables. The Delphi panel brought together 27 international experts in the field of severe asthma research. The process consisted of 3 iterative rounds. In each round, all Delphi panel members were issued an electronic ISAR Delphi workbook to complete and return to the ISAR Delphi administrator. Workbooks and result summaries were anonymously distributed by the Delphi administrator to all panel members at subsequent rounds. Finalization of the core variable list was facilitated by 2 face-to-face meetings.RESULTS: Of the initial 747 selected variables, the Delphi panel reached a consensus on 95. The chosen variables will allow severe asthma to be assessed against patient demographics and medical history, patient-reported outcomes, diagnostic information, and clinical characteristics. Physician-reported outcomes such as nonadherence and information about treatment and management strategies will also be recorded.CONCLUSIONS: This is the first global attempt to generate an ISAR using a common set of core variables to ensure that data collected across all participating countries are standardized.

AB - BACKGROUND: The lack of centralized data on severe asthma has resulted in a scarcity of information about the disease and its management. The development of a common data collection tool for the International Severe Asthma Registry (ISAR) will enable standardized data collection, subsequently enabling data interoperability.OBJECTIVES: To create a standardized list of variables for the first international registry for severe asthma via expert consensus.METHODS: A modified Delphi process was used to reach consensus on a minimum set of variables to capture in ISAR: the core variables. The Delphi panel brought together 27 international experts in the field of severe asthma research. The process consisted of 3 iterative rounds. In each round, all Delphi panel members were issued an electronic ISAR Delphi workbook to complete and return to the ISAR Delphi administrator. Workbooks and result summaries were anonymously distributed by the Delphi administrator to all panel members at subsequent rounds. Finalization of the core variable list was facilitated by 2 face-to-face meetings.RESULTS: Of the initial 747 selected variables, the Delphi panel reached a consensus on 95. The chosen variables will allow severe asthma to be assessed against patient demographics and medical history, patient-reported outcomes, diagnostic information, and clinical characteristics. Physician-reported outcomes such as nonadherence and information about treatment and management strategies will also be recorded.CONCLUSIONS: This is the first global attempt to generate an ISAR using a common set of core variables to ensure that data collected across all participating countries are standardized.

U2 - 10.1016/j.jaip.2018.08.016

DO - 10.1016/j.jaip.2018.08.016

M3 - Journal article

C2 - 30179741

VL - 7

SP - 578-588.e2

JO - The Journal of Allergy and Clinical Immunology: In Practice

JF - The Journal of Allergy and Clinical Immunology: In Practice

SN - 2213-2198

IS - 2

ER -