Adult Severe Asthma Registries: A Global and Growing Inventory

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  • Breda Cushen
  • Mariko Siyue Koh
  • Trung N Tran
  • Neil Martin
  • Ruth Murray
  • Thendral Uthaman
  • Celine Yun Yi Goh
  • Rebecca Vella
  • Neva Eleangovan
  • Lakmini Bulathsinhala
  • Jorge F Maspero
  • Matthew J Peters
  • Florence Schleich
  • Paulo Pitrez
  • George Christoff
  • Mohsen Sadatsafavi
  • Carlos A Torres-Duque
  • Porsbjerg, Celeste Michala
  • Alan Altraja
  • Lauri Lehtimäki
  • Arnaud Bourdin
  • Christian Taube
  • Nikolaos G Papadopoulos
  • Csoma Zsuzsanna
  • Unnur Björnsdóttir
  • Sundeep Salvi
  • Enrico Heffler
  • Takashi Iwanaga
  • Mona Al-Ahmad
  • Désirée Larenas-Linnemann
  • Job F M van Boven
  • Bernt Bøgvald Aarli
  • Piotr Kuna
  • Cláudia Chaves Loureiro
  • Riyad Al-Lehebi
  • Jae Ha Lee
  • Nuria Marina
  • Leif Bjermer
  • Chau-Chyun Sheu
  • Bassam Mahboub
  • John Busby
  • Andrew Menzies-Gow
  • Eileen Wang
  • David B Price
  • ISAR Inventory Study Group
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.

Keywords: Asia-Pacific, biologics, COVID-19, Europe, ISAR, International Severe Asthma Registry, oral corticosteroids, Registry, Middle East, Severe Asthma, Latin America, USA
OriginalsprogEngelsk
TidsskriftPragmatic and observational research
Vol/bind14
Sider (fra-til)127-147
Antal sider21
ISSN1179-7266
DOI
StatusUdgivet - 2023
Eksternt udgivetJa

Bibliografisk note

© 2023 Cushen et al.

ID: 396719059