Adult Severe Asthma Registries: A Global and Growing Inventory

ISAR Inventory Study Group; 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

Adult Severe Asthma Registries: A Global and Growing Inventory

ISAR Inventory Study Group, 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 AltrajaLauri 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

KIHA, Keuhko-, iho- ja allergiasairaudet

Tutkimustuotos: Artikkeli › Tieteellinen › vertaisarvioitu

13 Lataukset (Pure)

Abstrakti

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.

Alkuperäiskieli	Englanti
Sivut	127-147
Sivumäärä	21
Julkaisu	Pragmatic and observational research
Vuosikerta	14
DOI - pysyväislinkit	https://doi.org/10.2147/POR.S399879
Tila	Julkaistu - 2023
OKM-julkaisutyyppi	A1 Alkuperäisartikkeli tieteellisessä aikakauslehdessä

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10.2147/POR.S399879Lisenssi: CC BY-NC

POR-399879-adult-severe-asthma-registries--a-global-and-growing-invento-1Final published version, 1,68 MBLisenssi: CC BY-NC

https://urn.fi/URN:NBN:fi:tuni-202401171544Lisenssi: CC BY-NC

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ISAR Inventory Study Group, Cushen, B., Koh, M. S., Tran, T. N., Martin, N., Murray, R., Uthaman, T., Goh, C. Y. Y., Vella, R., Eleangovan, N., Bulathsinhala, L., Maspero, J. F., Peters, M. J., Schleich, F., Pitrez, P., Christoff, G., Sadatsafavi, M., Torres-Duque, C. A., Porsbjerg, C., ... Price, D. B. (2023). Adult Severe Asthma Registries: A Global and Growing Inventory. Pragmatic and observational research, 14, 127-147. https://doi.org/10.2147/POR.S399879

@article{17184b29e9b24f08b234f15110d31a28,

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'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.",

author = "{ISAR Inventory Study Group} and Breda Cushen and Koh, {Mariko Siyue} and Tran, {Trung N} and Neil Martin and Ruth Murray and Thendral Uthaman and Goh, {Celine Yun Yi} and Rebecca Vella and Neva Eleangovan and Lakmini Bulathsinhala and Maspero, {Jorge F} and Peters, {Matthew J} and Florence Schleich and Paulo Pitrez and George Christoff and Mohsen Sadatsafavi 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 Unnur Bj{\"o}rnsd{\'o}ttir 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 F M} and Aarli, {Bernt B{\o}gvald} and Piotr Kuna and Loureiro, {Cl{\'a}udia Chaves} and Riyad Al-Lehebi and Lee, {Jae Ha} and Nuria Marina and Leif Bjermer and Chau-Chyun Sheu and Bassam Mahboub and John Busby and Andrew Menzies-Gow and Eileen Wang and Price, {David B}",

note = "{\textcopyright} 2023 Cushen et al.",

year = "2023",

doi = "10.2147/POR.S399879",

language = "English",

volume = "14",

pages = "127--147",

}

ISAR Inventory Study Group, Cushen, B, Koh, MS, Tran, TN, Martin, N, Murray, R, Uthaman, T, Goh, CYY, Vella, R, Eleangovan, N, Bulathsinhala, L, Maspero, JF, Peters, MJ, Schleich, F, Pitrez, P, Christoff, G, Sadatsafavi, M, Torres-Duque, CA, Porsbjerg, C, Altraja, A, Lehtimäki, L, Bourdin, A, Taube, C, Papadopoulos, NG, Zsuzsanna, C, Björnsdóttir, U, Salvi, S, Heffler, E, Iwanaga, T, Al-Ahmad, M, Larenas-Linnemann, D, van Boven, JFM, Aarli, BB, Kuna, P, Loureiro, CC, Al-Lehebi, R, Lee, JH, Marina, N, Bjermer, L, Sheu, C-C, Mahboub, B, Busby, J, Menzies-Gow, A, Wang, E & Price, DB 2023, 'Adult Severe Asthma Registries: A Global and Growing Inventory', Pragmatic and observational research, Vuosikerta 14, Sivut 127-147. https://doi.org/10.2147/POR.S399879

TY - JOUR

T1 - Adult Severe Asthma Registries

T2 - A Global and Growing Inventory

AU - ISAR Inventory Study Group

AU - Cushen, Breda

AU - Koh, Mariko Siyue

AU - Tran, Trung N

AU - Martin, Neil

AU - Murray, Ruth

AU - Uthaman, Thendral

AU - Goh, Celine Yun Yi

AU - Vella, Rebecca

AU - Eleangovan, Neva

AU - Bulathsinhala, Lakmini

AU - Maspero, Jorge F

AU - Peters, Matthew J

AU - Schleich, Florence

AU - Pitrez, Paulo

AU - Christoff, George

AU - Sadatsafavi, 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

AU - Salvi, Sundeep

AU - Heffler, Enrico

AU - Iwanaga, Takashi

AU - Al-Ahmad, Mona

AU - Larenas-Linnemann, Désirée

AU - van Boven, Job F M

AU - Aarli, Bernt Bøgvald

AU - Kuna, Piotr

AU - Loureiro, Cláudia Chaves

AU - Al-Lehebi, Riyad

AU - Lee, Jae Ha

AU - Marina, Nuria

AU - Bjermer, Leif

AU - Sheu, Chau-Chyun

AU - Mahboub, Bassam

AU - Busby, John

AU - Menzies-Gow, Andrew

AU - Wang, Eileen

AU - Price, David B

PY - 2023

Y1 - 2023

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 (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.

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 (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.

U2 - 10.2147/POR.S399879

DO - 10.2147/POR.S399879

M3 - Article

C2 - 37881411

SN - 1179-7266

VL - 14

SP - 127

EP - 147

JO - Pragmatic and observational research

JF - Pragmatic and observational research

ER -

Adult Severe Asthma Registries: A Global and Growing Inventory

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