TY - JOUR
AU - Cushen, Breda
AU - Koh, Mariko Siyue
AU - Tran, Trung N
AU - Martin, Neil
AU - Murray, Ruth B
AU - Uthaman, Thendral
AU - Goh, Yun Yi Celine
AU - Vella, Rebecca
AU - Eleangovan, Nevaashni
AU - Bulathsinhala, Lakmini
AU - Maspero, Jorge F.
AU - Peters, Matthew J
AU - Schleich, Florence
AU - Pitrez, Paulo M
AU - Christoff, George
AU - Sadsatsafavi, Mohsen
AU - Torres-Duque, Carlos A.
AU - Porsbjerg, Celeste
AU - Altraja, Alan
AU - Lehtimäki, Lauri
AU - Bourdin, Arnaud
AU - Taube, Christian
AU - Papadopoulos, Nikolaos G
AU - Zsuzsanna,  Csoma
AU - Björnsdóttir, Unnur S.
AU - Salvi, Sundeep
AU - Heffler, Enrico
AU - Iwanaga, Takashi
AU - Al-Ahmad, Mona
AU - Larenas-Linnemann, Désirée E.
AU - van Boven, Job Fm
AU - Bøgvald Aarli, Bernt
AU - Kuna, Piotr
AU - Loureiro, Claudia Chaves
AU - Al-Lehebi, Riyad
AU - Lee, Jae Ha
AU - Marina, Nuria
AU - Bjermer, Leif
AU - Sheu, Chau-Chyun
AU - Sheu, Chau-Chyun
AU - Busby, John
AU - Wang, Eileen
AU - Price, David
PY - 2023
DA - October
TI - Adult severe asthma registries: a global and growing inventory
JO - Pragmatic and Observational Research
EP - 147
VL - 14
DO - https://doi.org/10.2147/POR.S399879
AB - 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 &gt; 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.
PB - Dove Press
UR - https://hdl.handle.net/2164/21986
KW - Coronavirus (COVID-19)
KW - Research methods
ER