dc.contributor.author |
ISAR Inventory Study Group |
dc.date.accessioned |
2024-01-27T01:05:15Z |
dc.date.available |
2024-01-27T01:05:15Z |
dc.date.issued |
2023-10-20 |
dc.identifier.citation |
ISAR Inventory Study Group 2023 , ' Adult Severe Asthma Registries : A Global and Growing Inventory ' , Pragmatic and observational research , vol. 14 , pp. 127-147 . https://doi.org/10.2147/POR.S399879 |
dc.identifier.issn |
1179-7266 |
dc.identifier.other |
216267856 |
dc.identifier.other |
9c4f3133-251b-408f-961f-65b9316d2926 |
dc.identifier.other |
37881411 |
dc.identifier.other |
PubMedCentral: PMC10595155 |
dc.identifier.uri |
https://hdl.handle.net/20.500.11815/4681 |
dc.description |
© 2023 Cushen et al. |
dc.description.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. |
dc.format.extent |
21 |
dc.format.extent |
1987193 |
dc.format.extent |
127-147 |
dc.language.iso |
en |
dc.relation.ispartofseries |
Pragmatic and observational research; 14() |
dc.rights |
info:eu-repo/semantics/openAccess |
dc.subject |
Lungnalæknisfræði |
dc.title |
Adult Severe Asthma Registries : A Global and Growing Inventory |
dc.type |
/dk/atira/pure/researchoutput/researchoutputtypes/contributiontojournal/article |
dc.description.version |
Peer reviewed |
dc.identifier.doi |
10.2147/POR.S399879 |
dc.contributor.department |
Other departments |