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, Celeste Porsbjerg, 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
{"title":"Adult Severe Asthma Registries: A Global and Growing Inventory.","authors":"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, Celeste Porsbjerg, 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","doi":"10.2147/POR.S399879","DOIUrl":null,"url":null,"abstract":"<p><strong>Aim: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":20399,"journal":{"name":"Pragmatic and Observational Research","volume":"14 ","pages":"127-147"},"PeriodicalIF":2.3000,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/48/7f/por-14-127.PMC10595155.pdf","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Pragmatic and Observational Research","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.2147/POR.S399879","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"MEDICINE, GENERAL & INTERNAL","Score":null,"Total":0}
引用次数: 0
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.
期刊介绍：
Pragmatic and Observational Research is an international, peer-reviewed, open-access journal that publishes data from studies designed to closely reflect medical interventions in real-world clinical practice, providing insights beyond classical randomized controlled trials (RCTs). While RCTs maximize internal validity for cause-and-effect relationships, they often represent only specific patient groups. This journal aims to complement such studies by providing data that better mirrors real-world patients and the usage of medicines, thus informing guidelines and enhancing the applicability of research findings across diverse patient populations encountered in everyday clinical practice.
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