@article{Cushen_B-2023_151433,
title = {Adult severe asthma registries: a global and growing inventory},
author = {Cushen, B. and Koh, M. and Tran, T. and Martin, N. and Murray, R. and Uthaman, T. and Goh, Y. and Vella, R. and Eleangovan, N. and Bulathsinhala, L. and Maspero, J. and Peters, M. and Schleich, F. and Pitrez, P. and Christoff, G. and Sadsatsafavi, M. and Torres-Duque, C. and Porsbjerg, C. and Altraja, A. and Lehtimäki, L. and Bourdin, A. and Taube, C. and Papadopoulos, N. and Zsuzsanna, C. and Björnsdóttir, U. and Salvi, S. and Heffler, E. and Iwanaga, T. and Al-Ahmad, M. and Larenas-Linnemann, D. and van Boven, J. and Bøgvald Aarli, B. and Kuna, P. and Loureiro, C. and Al-Lehebi, R. and Lee, J. and Marina, N. and Bjermer, L. and Sheu, C. and Sheu, C. and Busby, J. and Wang, E. and Price, D.},
month = {oct},
year = {2023},
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 &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.},
pages = {127-147},
volume = {14},
journal = {Pragmatic and Observational Research},
publisher = {Dove Press},
url = {https://doi.org/10.2147/POR.S399879},
}
