Lakmini Bulathsinhala1, Nevaashni Eleangovan1, Liam G Heaney2, Andrew Menzies-Gow3, Peter G Gibson4, Matthew Peters5, Mark Hew6, Job F M van Boven7, Lauri Lehtimäki8, Eric van Ganse9, Manon Belhassen9, Erin S Harvey4, Luis Perez de Llano10, Anke H Maitland-van der Zee11, Nikolaos G Papadopoulos12, J Mark FitzGerald13, Celeste Porsbjerg14, G Walter Canonica15, Vibeke Backer14, Chin Kook Rhee16, Katia M C Verhamme17, Roland Buhl18, Borja G Cosio19, Victoria Carter1, Chris Price1, Thao Le1, Martina Stagno d'Alcontres20, Gokul Gopalan21, Trung N Tran21, David Price22. 1. Optimum Patient Care, Cambridge, UK. 2. UK Severe Asthma Network and National Registry, Queen's University Belfast, Belfast, Northern Ireland, UK. 3. UK Severe Asthma Network and National Registry, Royal Brompton & Harefield National Health Service (NHS) Foundation Trust, London, UK. 4. Australasian Severe Asthma Network, Priority Research Centre for Healthy Lungs, University of Newcastle, Newcastle, NSW, Australia; Department of Respiratory and Sleep Medicine, Hunter Medical Research Institute, John Hunter Hospital, New Lambton Heights, NSW, Australia. 5. University of Sydney Medical School, Sydney, NSW, Australia. 6. Allergy, Asthma & Clinical Immunology Service, Alfred Health, Melbourne, Australia. 7. Department of General Practice, Groningen Research Institute for Asthma and COPD (GRIAC), University Medical Center Groningen, University of Groningen, Groningen, The Netherlands. 8. Allergy Centre, Tampere University Hospital, University of Tampere, Tampere, Finland. 9. Claude Bernard University Lyon, Lyon, France. 10. Pneumology Service, Hospital Universitario Lucus Augusti, Lugo, Spain. 11. Amsterdam University Medical Center, University of Amsterdam, Department of Respiratory Medicine, Amsterdam, The Netherlands. 12. University of Athens, Athens, Greece; University of Manchester, Manchester, UK. 13. The Institute for Heart Lung Health, Vancouver, BC, Canada. 14. Bispebjerg Hospital, Copenhagen University, Copenhagen, Denmark. 15. Personalized Medicine Asthma & Allergy Clinic, Humanitas University & Research Hospital, Milan, Italy; SANI-Severe Asthma Network Italy, Italy. 16. The Catholic University of Korea, Seoul, South Korea. 17. Erasmus Medical Center, Rotterdam, The Netherlands. 18. Mainz University Hospital, Mainz, Germany. 19. Son Espases University Hospital-IdISBa-Ciberes, Mallorca, Spain. 20. Observational and Pragmatic Research Institute, Singapore. 21. AstraZeneca, Short Hills, NJ. 22. Optimum Patient Care, Cambridge, UK; Observational and Pragmatic Research Institute, Singapore; Academic Primary Care, University of Aberdeen, Aberdeen, UK. Electronic address: dprice@opri.sg.
Abstract
BACKGROUND: The lack of centralized data on severe asthma has resulted in a scarcity of information about the disease and its management. The development of a common data collection tool for the International Severe Asthma Registry (ISAR) will enable standardized data collection, subsequently enabling data interoperability. OBJECTIVES: To create a standardized list of variables for the first international registry for severe asthma via expert consensus. METHODS: A modified Delphi process was used to reach consensus on a minimum set of variables to capture in ISAR: the core variables. The Delphi panel brought together 27 international experts in the field of severe asthma research. The process consisted of 3 iterative rounds. In each round, all Delphi panel members were issued an electronic ISAR Delphi workbook to complete and return to the ISAR Delphi administrator. Workbooks and result summaries were anonymously distributed by the Delphi administrator to all panel members at subsequent rounds. Finalization of the core variable list was facilitated by 2 face-to-face meetings. RESULTS: Of the initial 747 selected variables, the Delphi panel reached a consensus on 95. The chosen variables will allow severe asthma to be assessed against patient demographics and medical history, patient-reported outcomes, diagnostic information, and clinical characteristics. Physician-reported outcomes such as nonadherence and information about treatment and management strategies will also be recorded. CONCLUSIONS: This is the first global attempt to generate an ISAR using a common set of core variables to ensure that data collected across all participating countries are standardized.
BACKGROUND: The lack of centralized data on severe asthma has resulted in a scarcity of information about the disease and its management. The development of a common data collection tool for the International Severe Asthma Registry (ISAR) will enable standardized data collection, subsequently enabling data interoperability. OBJECTIVES: To create a standardized list of variables for the first international registry for severe asthma via expert consensus. METHODS: A modified Delphi process was used to reach consensus on a minimum set of variables to capture in ISAR: the core variables. The Delphi panel brought together 27 international experts in the field of severe asthma research. The process consisted of 3 iterative rounds. In each round, all Delphi panel members were issued an electronic ISAR Delphi workbook to complete and return to the ISAR Delphi administrator. Workbooks and result summaries were anonymously distributed by the Delphi administrator to all panel members at subsequent rounds. Finalization of the core variable list was facilitated by 2 face-to-face meetings. RESULTS: Of the initial 747 selected variables, the Delphi panel reached a consensus on 95. The chosen variables will allow severe asthma to be assessed against patient demographics and medical history, patient-reported outcomes, diagnostic information, and clinical characteristics. Physician-reported outcomes such as nonadherence and information about treatment and management strategies will also be recorded. CONCLUSIONS: This is the first global attempt to generate an ISAR using a common set of core variables to ensure that data collected across all participating countries are standardized.
Authors: Salman Siddiqui; Loren C Denlinger; Stephen J Fowler; Praveen Akuthota; Dominick E Shaw; Liam G Heaney; Louise Brown; Mario Castro; Tonya A Winders; Monica Kraft; Scott Wagers; Michael C Peters; Ian D Pavord; Samantha Walker; Nizar N Jarjour Journal: Am J Respir Crit Care Med Date: 2019-04-01 Impact factor: 21.405
Authors: Christopher S Ambrose; Bradley E Chipps; Wendy C Moore; Weily Soong; Jennifer Trevor; Dennis K Ledford; Warner W Carr; Njira Lugogo; Frank Trudo; Trung N Tran; Reynold A Panettieri Journal: Pragmat Obs Res Date: 2020-07-16
Authors: David J Jackson; John Busby; Paul E Pfeffer; Andrew Menzies-Gow; Thomas Brown; Robin Gore; Martin Doherty; Adel H Mansur; Simon Message; Robert Niven; Mitesh Patel; Liam G Heaney Journal: Thorax Date: 2020-12-09 Impact factor: 9.139
Authors: Peter G Gibson; Ian A Yang; John W Upham; Paul N Reynolds; Sandra Hodge; Alan L James; Christine Jenkins; Matthew J Peters; Guy B Marks; Melissa Baraket; Heather Powell; Jodie L Simpson Journal: ERJ Open Res Date: 2019-12-23
Authors: Susanne Hansen; Ole Hilberg; Charlotte Suppli Ulrik; Uffe Bodtger; Linda M Rasmussen; Karin D Assing; Alexandra Wimmer-Aune; Kirsten B Rasmussen; Niels Bjerring; Anders Christiansen; Johannes Schmid; Niels Steen Krogh; Celeste Porsbjerg Journal: Eur Clin Respir J Date: 2020-11-02
Authors: J Mark FitzGerald; Trung N Tran; Marianna Alacqua; Alan Altraja; Vibeke Backer; Leif Bjermer; Unnur Bjornsdottir; Arnaud Bourdin; Guy Brusselle; Lakmini Bulathsinhala; John Busby; Giorgio W Canonica; Victoria Carter; Isha Chaudhry; You Sook Cho; George Christoff; Borja G Cosio; Richard W Costello; Neva Eleangovan; Peter G Gibson; Liam G Heaney; Enrico Heffler; Mark Hew; Naeimeh Hosseini; Takashi Iwanaga; David J Jackson; Rupert Jones; Mariko S Koh; Thao Le; Lauri Lehtimäki; Dora Ludviksdottir; Anke H Maitland-van der Zee; Andrew Menzies-Gow; Ruth B Murray; Nikolaos G Papadopoulos; Luis Perez-de-Llano; Matthew Peters; Paul E Pfeffer; Todor A Popov; Celeste M Porsbjerg; Chris A Price; Chin K Rhee; Mohsen Sadatsafavi; Yuji Tohda; Eileen Wang; Michael E Wechsler; James Zangrilli; David B Price Journal: BMC Med Res Methodol Date: 2020-08-14 Impact factor: 4.615
Authors: Andrew N Menzies-Gow; Claire McBrien; Bindhu Unni; Celeste M Porsbjerg; Mona Al-Ahmad; Christopher S Ambrose; Karin Dahl Assing; Anna von Bülow; John Busby; Borja G Cosio; J Mark FitzGerald; Esther Garcia Gil; Susanne Hansen; Liam G aHeaney; Mark Hew; David J Jackson; Maria Kallieri; Stelios Loukides; Njira L Lugogo; Andriana I Papaioannou; Désirée Larenas-Linnemann; Wendy C Moore; Luis A Perez-de-Llano; Linda M Rasmussen; Johannes M Schmid; Salman Siddiqui; Marianna Alacqua; Trung N Tran; Charlotte Suppli Ulrik; John W Upham; Eileen Wang; Lakmini Bulathsinhala; Victoria A Carter; Isha Chaudhry; Neva Eleangovan; Ruth B Murray; Chris A Price; David B Price Journal: J Asthma Allergy Date: 2022-01-13