Adult severe asthma registries: a global and growing inventory

B Cushen, MS Koh, TN Tran, N Martin, R Murray, T Uthaman, CYY Goh, R Vella, N Eleangovan, L Bulathsinhala, JF Maspero, MJ Peters, F Schleich, P Pitrez, G Christoff, M Sadatsafavi, CA Torres-Duque, C Porsbjerg, A Altraja, L LehtimäkiA Bourdin, C Taube, NG Papadopoulos, C Zsuzsanna, U Björnsdóttir, S Salvi, E Heffler, T Iwanaga, M al-Ahmad, D Larenas-Linnemann, JF van Boven, BB Aarli, P Kuna, CC Loureiro, R Al-lehebi, JH Lee, N Marina, L Bjermer, CC Sheu, B Mahboub, Busby J, A Menzies-Gow, E Wang, DB Price

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Abstract

Aim: The International Severe Asthma Registry (ISAR; http://isaregistries.org/) uses standardised variables to enable multi-country and adequately powered research in severe asthma. This study aims to look at the data countries within ISAR and non-ISAR countries reported collecting that enable global research that support individual country interests.

Methods: Registries were identified by online searches and approaching severe asthma experts. Participating registries provided data collection specifications or confirmed variables collected. Core variables (results from ISAR’s Delphi study), steroid-related comorbidity variables, biologic safety variables (serious infection, anaphylaxis, and cancer), COVID-19 variables and additional variables (not belonging to the aforementioned categories) that registries reported collecting were summarised.

Results: Of the 37 registries identified, 26 were ISAR affiliates and 11 non-ISAR affiliates. Twenty-five ISAR-registries and 4 non-ISAR registries reported collecting > 90% of the 65 core variables. Twenty-three registries reported collecting all optional steroid-related comorbidity variables. Twenty-nine registries reported collecting all optional safety variables. Ten registries reported collecting COVID-19 variables. Twenty-four registries reported collecting additional variables including data from asthma questionnaires (10 Asthma Control Questionnaire, 20 Asthma Control Test, 11 Asthma Quality of Life Questionnaire, and 4 EuroQol 5-dimension 5-level Questionnaire). Eight registries are linked to databases such as electronic medical records and national claims or disease databases.

Conclusion: Standardised data collection has enabled individual severe asthma registries to collect unified data and increase statistical power for severe asthma research irrespective of ISAR affiliations
Original languageEnglish
Pages (from-to)127–147
JournalPragmatic and observational research
Volume14
DOIs
Publication statusPublished - 20 Oct 2023

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