1.Preferences of ICT among Patients with Chronic Kidney Disease Undergoing Hemodialysis: An Ecuadorian Cross-Sectional Study.
Ivan CHERREZ-OJEDA ; Miguel FELIX ; Valeria L MATA ; Emanuel VANEGAS ; Antonio W D GAVILANES ; Peter CHEDRAUI ; Daniel SIMANCAS-RACINES ; Juan Carlos CALDERON ; Fabian ORTIZ ; Guillermina BLUM ; Angela PLUA ; Gino GONZALEZ ; Grace MOSCOSO ; Walter MORQUECHO
Healthcare Informatics Research 2018;24(4):292-299
OBJECTIVES: The aim of the present study was to assess the frequency of use, and preferences regarding information and communication technologies (ICTs) among Ecuadorian patients with chronic kidney disease (CKD) undergoing hemodialysis. METHODS: We conducted an anonymous cross-sectional survey-based study from January 2016 to April 2017, involving 393 patients with end-stage renal disease from 9 hemodialysis centers, in which they rated their use and preferences of various ICTs through a modified version of the Michigan Questionnaire. The questionnaire collected information regarding demographics, patients' interest in obtaining health-related information through ICTs, and interest in using ICTs as a potential way to communicate with their healthcare providers. A chi-square test for association and adjusted regression analyses were performed. RESULTS: Among all patients who participated, 64.3% reported owning a cellphone, with less than a third reporting active Internet connection. The most used ICT for obtaining information about CKD and/or hemodialysis was web-based Internet, followed by YouTube. SMS was rated the highest to receive and seek health-related information, followed by Facebook. Younger age and higher levels of education were associated with a higher overall usage of ICTs. Finally, more than half of the patients reported interest in using WhatsApp for communicating with their healthcare providers. CONCLUSIONS: Understanding the preferences of ICTs among patients with CKD undergoing hemodialysis could help to improve their outcomes through the potential uses and benefits of ICTs. Further research is needed to assess their role in improving the care of patients with chronic diseases.
Anonyms and Pseudonyms
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Chronic Disease
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Cross-Sectional Studies*
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Demography
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Education
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Health Personnel
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Humans
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Internet
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Kidney Failure, Chronic
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Medical Informatics
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Michigan
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Renal Dialysis*
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Renal Insufficiency, Chronic*
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Social Media
2.International Severe Asthma Registry (ISAR): 2017–2024 Status and Progress Update
Désirée LARENAS-LINNEMANN ; Chin Kook RHEE ; Alan ALTRAJA ; John BUSBY ; Trung N. TRAN ; Eileen WANG ; Todor A. POPOV ; Patrick D. MITCHELL ; Paul E. PFEFFER ; Roy Alton PLEASANTS ; Rohit KATIAL ; Mariko Siyue KOH ; Arnaud BOURDIN ; Florence SCHLEICH ; Jorge MÁSPERO ; Mark HEW ; Matthew J. PETERS ; David J. JACKSON ; George C. CHRISTOFF ; Luis PEREZ-DE-LLANO ; Ivan CHERREZ- OJEDA ; João A. FONSECA ; Richard W. COSTELLO ; Carlos A. TORRES-DUQUE ; Piotr KUNA ; Andrew N. MENZIES-GOW ; Neda STJEPANOVIC ; Peter G. GIBSON ; Paulo Márcio PITREZ ; Celine BERGERON ; Celeste M. PORSBJERG ; Camille TAILLÉ ; Christian TAUBE ; Nikolaos G. PAPADOPOULOS ; Andriana I. PAPAIOANNOU ; Sundeep SALVI ; Giorgio Walter CANONICA ; Enrico HEFFLER ; Takashi IWANAGA ; Mona S. AL-AHMAD ; Sverre LEHMANN ; Riyad AL-LEHEBI ; Borja G. COSIO ; Diahn-Warng PERNG ; Bassam MAHBOUB ; Liam G. HEANEY ; Pujan H. PATEL ; Njira LUGOGO ; Michael E. WECHSLER ; Lakmini BULATHSINHALA ; Victoria CARTER ; Kirsty FLETTON ; David L. NEIL ; Ghislaine SCELO ; David B. PRICE
Tuberculosis and Respiratory Diseases 2025;88(2):193-215
The International Severe Asthma Registry (ISAR) was established in 2017 to advance the understanding of severe asthma and its management, thereby improving patient care worldwide. As the first global registry for adults with severe asthma, ISAR enabled individual registries to standardize and pool their data, creating a comprehensive, harmonized dataset with sufficient statistical power to address key research questions and knowledge gaps. Today, ISAR is the largest repository of real-world data on severe asthma, curating data on nearly 35,000 patients from 28 countries worldwide, and has become a leading contributor to severe asthma research. Research using ISAR data has provided valuable insights on the characteristics of severe asthma, its burdens and risk factors, real-world treatment effectiveness, and barriers to specialist care, which are collectively informing improved asthma management. Besides changing clinical thinking via research, ISAR aims to advance real-world practice through initiatives that improve registry data quality and severe asthma care. In 2024, ISAR refined essential research variables to enhance data quality and launched a web-based data acquisition and reporting system (QISAR), which integrates data collection with clinical consultations and enables longitudinal data tracking at patient, center, and population levels. Quality improvement priorities include collecting standardized data during consultations and tracking and optimizing patient journeys via QISAR and integrating primary/secondary care pathways to expedite specialist severe asthma management and facilitate clinical trial recruitment. ISAR envisions a future in which timely specialist referral and initiation of biologic therapy can obviate long-term systemic corticosteroid use and enable more patients to achieve remission.
3.International Severe Asthma Registry (ISAR): 2017–2024 Status and Progress Update
Désirée LARENAS-LINNEMANN ; Chin Kook RHEE ; Alan ALTRAJA ; John BUSBY ; Trung N. TRAN ; Eileen WANG ; Todor A. POPOV ; Patrick D. MITCHELL ; Paul E. PFEFFER ; Roy Alton PLEASANTS ; Rohit KATIAL ; Mariko Siyue KOH ; Arnaud BOURDIN ; Florence SCHLEICH ; Jorge MÁSPERO ; Mark HEW ; Matthew J. PETERS ; David J. JACKSON ; George C. CHRISTOFF ; Luis PEREZ-DE-LLANO ; Ivan CHERREZ- OJEDA ; João A. FONSECA ; Richard W. COSTELLO ; Carlos A. TORRES-DUQUE ; Piotr KUNA ; Andrew N. MENZIES-GOW ; Neda STJEPANOVIC ; Peter G. GIBSON ; Paulo Márcio PITREZ ; Celine BERGERON ; Celeste M. PORSBJERG ; Camille TAILLÉ ; Christian TAUBE ; Nikolaos G. PAPADOPOULOS ; Andriana I. PAPAIOANNOU ; Sundeep SALVI ; Giorgio Walter CANONICA ; Enrico HEFFLER ; Takashi IWANAGA ; Mona S. AL-AHMAD ; Sverre LEHMANN ; Riyad AL-LEHEBI ; Borja G. COSIO ; Diahn-Warng PERNG ; Bassam MAHBOUB ; Liam G. HEANEY ; Pujan H. PATEL ; Njira LUGOGO ; Michael E. WECHSLER ; Lakmini BULATHSINHALA ; Victoria CARTER ; Kirsty FLETTON ; David L. NEIL ; Ghislaine SCELO ; David B. PRICE
Tuberculosis and Respiratory Diseases 2025;88(2):193-215
The International Severe Asthma Registry (ISAR) was established in 2017 to advance the understanding of severe asthma and its management, thereby improving patient care worldwide. As the first global registry for adults with severe asthma, ISAR enabled individual registries to standardize and pool their data, creating a comprehensive, harmonized dataset with sufficient statistical power to address key research questions and knowledge gaps. Today, ISAR is the largest repository of real-world data on severe asthma, curating data on nearly 35,000 patients from 28 countries worldwide, and has become a leading contributor to severe asthma research. Research using ISAR data has provided valuable insights on the characteristics of severe asthma, its burdens and risk factors, real-world treatment effectiveness, and barriers to specialist care, which are collectively informing improved asthma management. Besides changing clinical thinking via research, ISAR aims to advance real-world practice through initiatives that improve registry data quality and severe asthma care. In 2024, ISAR refined essential research variables to enhance data quality and launched a web-based data acquisition and reporting system (QISAR), which integrates data collection with clinical consultations and enables longitudinal data tracking at patient, center, and population levels. Quality improvement priorities include collecting standardized data during consultations and tracking and optimizing patient journeys via QISAR and integrating primary/secondary care pathways to expedite specialist severe asthma management and facilitate clinical trial recruitment. ISAR envisions a future in which timely specialist referral and initiation of biologic therapy can obviate long-term systemic corticosteroid use and enable more patients to achieve remission.
4.International Severe Asthma Registry (ISAR): 2017–2024 Status and Progress Update
Désirée LARENAS-LINNEMANN ; Chin Kook RHEE ; Alan ALTRAJA ; John BUSBY ; Trung N. TRAN ; Eileen WANG ; Todor A. POPOV ; Patrick D. MITCHELL ; Paul E. PFEFFER ; Roy Alton PLEASANTS ; Rohit KATIAL ; Mariko Siyue KOH ; Arnaud BOURDIN ; Florence SCHLEICH ; Jorge MÁSPERO ; Mark HEW ; Matthew J. PETERS ; David J. JACKSON ; George C. CHRISTOFF ; Luis PEREZ-DE-LLANO ; Ivan CHERREZ- OJEDA ; João A. FONSECA ; Richard W. COSTELLO ; Carlos A. TORRES-DUQUE ; Piotr KUNA ; Andrew N. MENZIES-GOW ; Neda STJEPANOVIC ; Peter G. GIBSON ; Paulo Márcio PITREZ ; Celine BERGERON ; Celeste M. PORSBJERG ; Camille TAILLÉ ; Christian TAUBE ; Nikolaos G. PAPADOPOULOS ; Andriana I. PAPAIOANNOU ; Sundeep SALVI ; Giorgio Walter CANONICA ; Enrico HEFFLER ; Takashi IWANAGA ; Mona S. AL-AHMAD ; Sverre LEHMANN ; Riyad AL-LEHEBI ; Borja G. COSIO ; Diahn-Warng PERNG ; Bassam MAHBOUB ; Liam G. HEANEY ; Pujan H. PATEL ; Njira LUGOGO ; Michael E. WECHSLER ; Lakmini BULATHSINHALA ; Victoria CARTER ; Kirsty FLETTON ; David L. NEIL ; Ghislaine SCELO ; David B. PRICE
Tuberculosis and Respiratory Diseases 2025;88(2):193-215
The International Severe Asthma Registry (ISAR) was established in 2017 to advance the understanding of severe asthma and its management, thereby improving patient care worldwide. As the first global registry for adults with severe asthma, ISAR enabled individual registries to standardize and pool their data, creating a comprehensive, harmonized dataset with sufficient statistical power to address key research questions and knowledge gaps. Today, ISAR is the largest repository of real-world data on severe asthma, curating data on nearly 35,000 patients from 28 countries worldwide, and has become a leading contributor to severe asthma research. Research using ISAR data has provided valuable insights on the characteristics of severe asthma, its burdens and risk factors, real-world treatment effectiveness, and barriers to specialist care, which are collectively informing improved asthma management. Besides changing clinical thinking via research, ISAR aims to advance real-world practice through initiatives that improve registry data quality and severe asthma care. In 2024, ISAR refined essential research variables to enhance data quality and launched a web-based data acquisition and reporting system (QISAR), which integrates data collection with clinical consultations and enables longitudinal data tracking at patient, center, and population levels. Quality improvement priorities include collecting standardized data during consultations and tracking and optimizing patient journeys via QISAR and integrating primary/secondary care pathways to expedite specialist severe asthma management and facilitate clinical trial recruitment. ISAR envisions a future in which timely specialist referral and initiation of biologic therapy can obviate long-term systemic corticosteroid use and enable more patients to achieve remission.
5.International Severe Asthma Registry (ISAR): 2017–2024 Status and Progress Update
Désirée LARENAS-LINNEMANN ; Chin Kook RHEE ; Alan ALTRAJA ; John BUSBY ; Trung N. TRAN ; Eileen WANG ; Todor A. POPOV ; Patrick D. MITCHELL ; Paul E. PFEFFER ; Roy Alton PLEASANTS ; Rohit KATIAL ; Mariko Siyue KOH ; Arnaud BOURDIN ; Florence SCHLEICH ; Jorge MÁSPERO ; Mark HEW ; Matthew J. PETERS ; David J. JACKSON ; George C. CHRISTOFF ; Luis PEREZ-DE-LLANO ; Ivan CHERREZ- OJEDA ; João A. FONSECA ; Richard W. COSTELLO ; Carlos A. TORRES-DUQUE ; Piotr KUNA ; Andrew N. MENZIES-GOW ; Neda STJEPANOVIC ; Peter G. GIBSON ; Paulo Márcio PITREZ ; Celine BERGERON ; Celeste M. PORSBJERG ; Camille TAILLÉ ; Christian TAUBE ; Nikolaos G. PAPADOPOULOS ; Andriana I. PAPAIOANNOU ; Sundeep SALVI ; Giorgio Walter CANONICA ; Enrico HEFFLER ; Takashi IWANAGA ; Mona S. AL-AHMAD ; Sverre LEHMANN ; Riyad AL-LEHEBI ; Borja G. COSIO ; Diahn-Warng PERNG ; Bassam MAHBOUB ; Liam G. HEANEY ; Pujan H. PATEL ; Njira LUGOGO ; Michael E. WECHSLER ; Lakmini BULATHSINHALA ; Victoria CARTER ; Kirsty FLETTON ; David L. NEIL ; Ghislaine SCELO ; David B. PRICE
Tuberculosis and Respiratory Diseases 2025;88(2):193-215
The International Severe Asthma Registry (ISAR) was established in 2017 to advance the understanding of severe asthma and its management, thereby improving patient care worldwide. As the first global registry for adults with severe asthma, ISAR enabled individual registries to standardize and pool their data, creating a comprehensive, harmonized dataset with sufficient statistical power to address key research questions and knowledge gaps. Today, ISAR is the largest repository of real-world data on severe asthma, curating data on nearly 35,000 patients from 28 countries worldwide, and has become a leading contributor to severe asthma research. Research using ISAR data has provided valuable insights on the characteristics of severe asthma, its burdens and risk factors, real-world treatment effectiveness, and barriers to specialist care, which are collectively informing improved asthma management. Besides changing clinical thinking via research, ISAR aims to advance real-world practice through initiatives that improve registry data quality and severe asthma care. In 2024, ISAR refined essential research variables to enhance data quality and launched a web-based data acquisition and reporting system (QISAR), which integrates data collection with clinical consultations and enables longitudinal data tracking at patient, center, and population levels. Quality improvement priorities include collecting standardized data during consultations and tracking and optimizing patient journeys via QISAR and integrating primary/secondary care pathways to expedite specialist severe asthma management and facilitate clinical trial recruitment. ISAR envisions a future in which timely specialist referral and initiation of biologic therapy can obviate long-term systemic corticosteroid use and enable more patients to achieve remission.
6.International Severe Asthma Registry (ISAR): 2017–2024 Status and Progress Update
Désirée LARENAS-LINNEMANN ; Chin Kook RHEE ; Alan ALTRAJA ; John BUSBY ; Trung N. TRAN ; Eileen WANG ; Todor A. POPOV ; Patrick D. MITCHELL ; Paul E. PFEFFER ; Roy Alton PLEASANTS ; Rohit KATIAL ; Mariko Siyue KOH ; Arnaud BOURDIN ; Florence SCHLEICH ; Jorge MÁSPERO ; Mark HEW ; Matthew J. PETERS ; David J. JACKSON ; George C. CHRISTOFF ; Luis PEREZ-DE-LLANO ; Ivan CHERREZ- OJEDA ; João A. FONSECA ; Richard W. COSTELLO ; Carlos A. TORRES-DUQUE ; Piotr KUNA ; Andrew N. MENZIES-GOW ; Neda STJEPANOVIC ; Peter G. GIBSON ; Paulo Márcio PITREZ ; Celine BERGERON ; Celeste M. PORSBJERG ; Camille TAILLÉ ; Christian TAUBE ; Nikolaos G. PAPADOPOULOS ; Andriana I. PAPAIOANNOU ; Sundeep SALVI ; Giorgio Walter CANONICA ; Enrico HEFFLER ; Takashi IWANAGA ; Mona S. AL-AHMAD ; Sverre LEHMANN ; Riyad AL-LEHEBI ; Borja G. COSIO ; Diahn-Warng PERNG ; Bassam MAHBOUB ; Liam G. HEANEY ; Pujan H. PATEL ; Njira LUGOGO ; Michael E. WECHSLER ; Lakmini BULATHSINHALA ; Victoria CARTER ; Kirsty FLETTON ; David L. NEIL ; Ghislaine SCELO ; David B. PRICE
Tuberculosis and Respiratory Diseases 2025;88(2):193-215
The International Severe Asthma Registry (ISAR) was established in 2017 to advance the understanding of severe asthma and its management, thereby improving patient care worldwide. As the first global registry for adults with severe asthma, ISAR enabled individual registries to standardize and pool their data, creating a comprehensive, harmonized dataset with sufficient statistical power to address key research questions and knowledge gaps. Today, ISAR is the largest repository of real-world data on severe asthma, curating data on nearly 35,000 patients from 28 countries worldwide, and has become a leading contributor to severe asthma research. Research using ISAR data has provided valuable insights on the characteristics of severe asthma, its burdens and risk factors, real-world treatment effectiveness, and barriers to specialist care, which are collectively informing improved asthma management. Besides changing clinical thinking via research, ISAR aims to advance real-world practice through initiatives that improve registry data quality and severe asthma care. In 2024, ISAR refined essential research variables to enhance data quality and launched a web-based data acquisition and reporting system (QISAR), which integrates data collection with clinical consultations and enables longitudinal data tracking at patient, center, and population levels. Quality improvement priorities include collecting standardized data during consultations and tracking and optimizing patient journeys via QISAR and integrating primary/secondary care pathways to expedite specialist severe asthma management and facilitate clinical trial recruitment. ISAR envisions a future in which timely specialist referral and initiation of biologic therapy can obviate long-term systemic corticosteroid use and enable more patients to achieve remission.