Adult severe asthma registries: a global and growing inventory

Breda Cushen; Mariko Siyue Koh; Trung N Tran; Neil  Martin; Ruth B Murray; Thendral  Uthaman; Yun Yi Celine Goh; Rebecca  Vella; Nevaashni Eleangovan; Lakmini Bulathsinhala; Jorge F Maspero; Matthew J Peters; Florence  Schleich; Paulo M Pitrez; George Christoff; Mohsen  Sadsatsafavi; Carlos A.  Torres-Duque; Celeste Porsbjerg; Alan Altraja; Lauri Lehtimäki; Arnaud Bourdin; Christian  Taube; Nikolaos G Papadopoulos; Csoma  Zsuzsanna; Unnur S.  Björnsdóttir; Sundeep Salvi; Enrico Heffler; Takashi Iwanaga; Mona Al-Ahmad; Désirée Larenas-Linnemann; Job FM  van Boven; Bernt  Bøgvald Aarli; Piotr Kuna; Claudia Chaves Loureiro; Riyad  Al-Lehebi; Jae Ha  Lee; Nuria  Marina; Leif Bjermer; Chau-Chyun  Sheu; Chau-Chyun  Sheu; John  Busby; Eileen Wang; David Price

doi:10.2147/POR.S399879

Adult severe asthma registries: a global and growing inventory

Breda Cushen, Mariko Siyue Koh, Trung N Tran, Neil Martin, Ruth B Murray, Thendral Uthaman, Yun Yi Celine Goh, Rebecca Vella, Nevaashni Eleangovan, Lakmini Bulathsinhala, Jorge F Maspero, Matthew J Peters, Florence Schleich, Paulo M Pitrez, George Christoff, Mohsen Sadsatsafavi, Carlos A. Torres-Duque, Celeste Porsbjerg, Alan Altraja, Lauri LehtimäkiArnaud Bourdin, Christian Taube, Nikolaos G Papadopoulos, Csoma Zsuzsanna, Unnur S. Björnsdóttir, Sundeep Salvi, Enrico Heffler, Takashi Iwanaga, Mona Al-Ahmad, Désirée Larenas-Linnemann, Job FM van Boven, Bernt Bøgvald Aarli, Piotr Kuna, Claudia Chaves Loureiro, Riyad Al-Lehebi, Jae Ha Lee, Nuria Marina, Leif Bjermer, Chau-Chyun Sheu, Chau-Chyun Sheu, John Busby, Eileen Wang, David Price^* (Corresponding Author)

^*Corresponding author for this work

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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. Twentythree 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.

Original language	English
Pages (from-to)	127—147
Number of pages	21
Journal	Pragmatic and Observational Research
Volume	2023
Issue number	14
Early online date	20 Oct 2023
DOIs	https://doi.org/10.2147/POR.S399879
Publication status	Published - 20 Oct 2023

Bibliographical note

Acknowledgement
The authors would like to thank Mr Joash Tan (BSc, Hons) and Ms Andrea Lim (BSc, Hons) of the Observational Pragmatic Research Institute (OPRI) for their editorial and formatting assistance that supported the development of this publication.
The author would also like to acknowledge the collaborators from the following countries, for their valuable contribution to the publication.
Funding statement
This study was conducted by the Observational and Pragmatic Research Institute (OPRI) Pte Ltd and was funded by Optimum Patient Care Global. No funding was received by the Observational & Pragmatic Research Institute Pte Ltd (OPRI) for its contribution

Keywords

Asia-Pacific
Biologics
COVID-19
Europe
ISAR
International Severe Asthma Registry
Oral Corticosteroids
Registry
Middle East
Severe Asthma
Latin America
USA

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Cushen, B., Koh, M. S., Tran, T. N., Martin, N., Murray, R. B., Uthaman, T., Goh, Y. Y. C., Vella, R., Eleangovan, N., Bulathsinhala, L., Maspero, J. F., Peters, M. J., Schleich, F., Pitrez, P. M., Christoff, G., Sadsatsafavi, M., Torres-Duque, C. A., Porsbjerg, C., Altraja, A., ... Price, D. (2023). Adult severe asthma registries: a global and growing inventory . Pragmatic and Observational Research, 2023(14), 127—147. https://doi.org/10.2147/POR.S399879

Cushen, B, Koh, MS, Tran, TN, Martin, N, Murray, RB, Uthaman, T, Goh, YYC, Vella, R, Eleangovan, N, Bulathsinhala, L, Maspero, JF, Peters, MJ, Schleich, F, Pitrez, PM, Christoff, G, Sadsatsafavi, M, Torres-Duque, CA, Porsbjerg, C, Altraja, A, Lehtimäki, L, Bourdin, A, Taube, C, Papadopoulos, NG, Zsuzsanna, C, Björnsdóttir, US, Salvi, S, Heffler, E, Iwanaga, T, Al-Ahmad, M, Larenas-Linnemann, D, van Boven, JFM, Bøgvald Aarli, B, Kuna, P, Loureiro, CC, Al-Lehebi, R, Lee, JH, Marina, N, Bjermer, L, Sheu, C-C, Sheu, C-C, Busby, J, Wang, E & Price, D 2023, 'Adult severe asthma registries: a global and growing inventory ', Pragmatic and Observational Research, vol. 2023, no. 14, pp. 127—147. https://doi.org/10.2147/POR.S399879

@article{1080d1e2cb274638a3f2301d796b87dd,

title = "Adult severe asthma registries: a global and growing inventory ",

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{\textquoteright}s Delphi study), steroid-related comorbidity variables, biologic safety variables (serious infection, anaphylaxis, and cancer), COVID-19 variables and additional variables (notbelonging 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. Twentythree registries reported collecting all optional steroid-related comorbidity variables. Twenty-nineregistries 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 LifeQuestionnaire, 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.",

keywords = "Asia-Pacific, Biologics, COVID-19, Europe, ISAR, International Severe Asthma Registry, Oral Corticosteroids, Registry, Middle East, Severe Asthma, Latin America, USA",

author = "Breda Cushen and Koh, {Mariko Siyue} and Tran, {Trung N} and Neil Martin and Murray, {Ruth B} and Thendral Uthaman and Goh, {Yun Yi Celine} and Rebecca Vella and Nevaashni Eleangovan and Lakmini Bulathsinhala and Maspero, {Jorge F} and Peters, {Matthew J} and Florence Schleich and Pitrez, {Paulo M} and George Christoff and Mohsen Sadsatsafavi and Torres-Duque, {Carlos A.} and Celeste Porsbjerg and Alan Altraja and Lauri Lehtim{\"a}ki and Arnaud Bourdin and Christian Taube and Papadopoulos, {Nikolaos G} and Csoma Zsuzsanna and Bj{\"o}rnsd{\'o}ttir, {Unnur S.} and Sundeep Salvi and Enrico Heffler and Takashi Iwanaga and Mona Al-Ahmad and D{\'e}sir{\'e}e Larenas-Linnemann and {van Boven}, {Job FM} and {B{\o}gvald Aarli}, Bernt and Piotr Kuna and Loureiro, {Claudia Chaves} and Riyad Al-Lehebi and Lee, {Jae Ha} and Nuria Marina and Leif Bjermer and Chau-Chyun Sheu and Chau-Chyun Sheu and John Busby and Eileen Wang and David Price",

note = "Acknowledgement The authors would like to thank Mr Joash Tan (BSc, Hons) and Ms Andrea Lim (BSc, Hons) of the Observational Pragmatic Research Institute (OPRI) for their editorial and formatting assistance that supported the development of this publication. The author would also like to acknowledge the collaborators from the following countries, for their valuable contribution to the publication. Funding statement This study was conducted by the Observational and Pragmatic Research Institute (OPRI) Pte Ltd and was funded by Optimum Patient Care Global. No funding was received by the Observational & Pragmatic Research Institute Pte Ltd (OPRI) for its contribution",

year = "2023",

month = oct,

day = "20",

doi = "10.2147/POR.S399879",

language = "English",

volume = "2023",

pages = "127—147",

journal = "Pragmatic and Observational Research",

issn = "1179-7266",

publisher = "Dove Medical Press Ltd.",

number = "14",

}

TY - JOUR

T1 - Adult severe asthma registries

T2 - a global and growing inventory

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

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 - Busby, John

AU - Wang, Eileen

AU - Price, David

N1 - Acknowledgement The authors would like to thank Mr Joash Tan (BSc, Hons) and Ms Andrea Lim (BSc, Hons) of the Observational Pragmatic Research Institute (OPRI) for their editorial and formatting assistance that supported the development of this publication. The author would also like to acknowledge the collaborators from the following countries, for their valuable contribution to the publication. Funding statement This study was conducted by the Observational and Pragmatic Research Institute (OPRI) Pte Ltd and was funded by Optimum Patient Care Global. No funding was received by the Observational & Pragmatic Research Institute Pte Ltd (OPRI) for its contribution

PY - 2023/10/20

Y1 - 2023/10/20

N2 - 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 (notbelonging 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. Twentythree registries reported collecting all optional steroid-related comorbidity variables. Twenty-nineregistries 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 LifeQuestionnaire, 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.

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 (notbelonging 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. Twentythree registries reported collecting all optional steroid-related comorbidity variables. Twenty-nineregistries 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 LifeQuestionnaire, 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.

KW - Asia-Pacific

KW - Biologics

KW - COVID-19

KW - Europe

KW - ISAR

KW - International Severe Asthma Registry

KW - Oral Corticosteroids

KW - Registry

KW - Middle East

KW - Severe Asthma

KW - Latin America

KW - USA

U2 - 10.2147/POR.S399879

DO - 10.2147/POR.S399879

M3 - Article

C2 - 37881411

SN - 1179-7266

VL - 2023

SP - 127—147

JO - Pragmatic and Observational Research

JF - Pragmatic and Observational Research

IS - 14

ER -

Adult severe asthma registries: a global and growing inventory

Abstract

Bibliographical note

Keywords

UN SDGs

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Cite this