Adult severe asthma registries: a global and growing inventory - Repository

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: https://doi.org/10.2147/POR.S399879

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.

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Cushen, B., Koh, M., Tran, T., Martin, N., Murray, R., Uthaman, T., Goh, Y., Vella, R., Eleangovan, N., Bulathsinhala, L., Maspero, J., Peters, M., Schleich, F., Pitrez, P., Christoff, G., Sadsatsafavi, M., Torres-Duque, C., Porsbjerg, C., Altraja, A., Lehtimäki, L., Bourdin, A., Taube, C., Papadopoulos, N., Zsuzsanna, C., Björnsdóttir, U., Salvi, S., Heffler, E., Iwanaga, T., Al-Ahmad, M., Larenas-Linnemann, D., van Boven, J., Bøgvald Aarli, B., Kuna, P., Loureiro, C., Al-Lehebi, R., Lee, J., Marina, N., Bjermer, L., Sheu, C., Sheu, C., Busby, J., Wang, E. & Price, D. 2023, 'Adult severe asthma registries: a global and growing inventory', Pragmatic and Observational Research, 14, pp. 127-147. https://doi.org/10.2147/POR.S399879

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DOI: https://doi.org/10.2147/POR.S399879

Repository URI: https://hdl.handle.net/2164/21986