International severe asthma registry (ISAR): protocol for a global registry.

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International severe asthma registry (ISAR): protocol for a global registry.

International severe asthma registry (ISAR): protocol for a global registry.

アブストラクト	BACKGROUND: Severe asthma exerts a disproportionately heavy burden on patients and health care. Due to the heterogeneity of the severe asthma population, many patients need to be evaluated to understand the clinical features and outcomes of severe asthma in order to facilitate personalised and targeted care. The International Severe Asthma Registry (ISAR) is a multi-country registry project initiated to aid in this endeavour. METHODS: ISAR is a multi-disciplinary initiative benefitting from the combined experience of the ISAR Steering Committee (ISC; comprising 47 clinicians and researchers across 29 countries, who have a special interest and/or experience in severe asthma management or establishment and maintenance of severe asthma registries) in collaboration with scientists and experts in database management and communication. Patients (>/=18 years old) receiving treatment according to the 2018 definitions of the Global Initiative for Asthma (GINA) Step 5 or uncontrolled on GINA Step 4 treatment will be included. Data will be collected on a core set of 95 variables identified using the Delphi method. Participating registries will agree to provide access to and share standardised anonymous patient-level data with ISAR. ISAR is a registered data source on the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance. ISAR's collaborators include Optimum Patient Care, the Respiratory Effectiveness Group (REG) and AstraZeneca. ISAR is overseen by the ISC, REG, the Anonymised Data Ethics & Protocol Transparency Committee and the ISAR operational committee, ensuring the conduct of ethical, clinically relevant research that brings value to all key stakeholders. CONCLUSIONS: ISAR aims to offer a rich source of real-life data for scientific research to understand and improve disease burden, treatment patterns and patient outcomes in severe asthma. Furthermore, the registry will provide an international platform for research collaboration in respiratory medicine, with the overarching aim of improving primary and secondary care of adults with severe asthma globally.
ジャーナル名	BMC medical research methodology
投稿日	2020/8/21
投稿者	FitzGerald, J Mark; Tran, Trung N; Alacqua, Marianna; Altraja, Alan; Backer, Vibeke; Bjermer, Leif; Bjornsdottir, Unnur; Bourdin, Arnaud; Brusselle, Guy; Bulathsinhala, Lakmini; Busby, John; Canonica, Giorgio W; Carter, Victoria; Chaudhry, Isha; Cho, You Sook; Christoff, George; Cosio, Borja G; Costello, Richard W; Eleangovan, Neva; Gibson, Peter G; Heaney, Liam G; Heffler, Enrico; Hew, Mark; Hosseini, Naeimeh; Iwanaga, Takashi; Jackson, David J; Jones, Rupert; Koh, Mariko S; Le, Thao; Lehtimaki, Lauri; Ludviksdottir, Dora; Maitland-van der Zee, Anke H; Menzies-Gow, Andrew; Murray, Ruth B; Papadopoulos, Nikolaos G; Perez-de-Llano, Luis; Peters, Matthew; Pfeffer, Paul E; Popov, Todor A; Porsbjerg, Celeste M; Price, Chris A; Rhee, Chin K; Sadatsafavi, Mohsen; Tohda, Yuji; Wang, Eileen; Wechsler, Michael E; Zangrilli, James; Price, David B
組織名	The Institute for Heart Lung Health, Vancouver, Canada.;AstraZeneca, Gaithersburg, USA.;Department of Pulmonary Medicine, University of Tartu and Lung Clinic, Tartu;University Hospital, Tartu, Estonia.;Center of Physical Activity Research, Rigshospitalet and Copenhagen University,;Copenhagen, Denmark.;Department of Respiratory Medicine & Allergology, Skane University Hospital,;Lund, Sweden.;Faculty of Medicine, University of Iceland, Reykjavik, Iceland.;Department of Respiratory Diseases, Montpellier University Hospitals, Hopital;Arnaud de Villeneuve and PhyMed Exp (INSERM U 1046, CNRS UMR9214), Universite de;Montpellier, Montpellier, France.;Department of Respiratory Medicine, Ghent University Hospital, Ghent, Belgium.;Departments of Epidemiology and Respiratory Medicine, Erasmus Medical Center;Rotterdam, Rotterdam, The Netherlands.;Optimum Patient Care, Cambridge, UK.;Centre for Public Health, Queen's University Belfast, Belfast, UK.;Personalized Medicine Asthma & Allergy Clinic, Humanitas University & Research;Hospital, Milan, Italy.;SANI-Severe Asthma Network Italy, Milan, Italy.;Division of Allergy, Department of Medicine, Asan Medical Center, College of;Medicine, University of Ulsan, Seoul, South Korea.;Faculty of Public Health, Medical University - Sofia, Sofia, Bulgaria.;Son Espases University Hospital-IdISBa-Ciberes, Mallorca, Spain.;Clinical Research Centre, Smurfit Building Beaumont Hospital and Department of;Respiratory Medicine, RCSI, Dublin, Ireland.;Australasian Severe Asthma Network, Priority Research Centre for Healthy Lungs,;University of Newcastle, Newcastle, Australia.;Department of Respiratory and Sleep Medicine, Hunter Medical Research Institute,;John Hunter Hospital, New Lambton Heights, Australia.;Centre for Experimental Medicine, Queen's University Belfast, Belfast, UK.;Alfred Health & Monash University, Melbourne, Australia.;Department of Respiratory Medicine & Allergology, Faculty of Medicine, Kindai;University Hospital, Osakasayama, Japan.;Guy's & St Thomas' NHS Trust and King's College London, London, UK.;Faculty of Medicine & Dentistry, University of Plymouth, Plymouth, UK.;Department of Respiratory & Critical Care Medicine, Singapore General Hospital;and Duke-National University Singapore Medical School, Singapore, Singapore.;Allergy Centre, Tampere University Hospital and Tampere University, Tampere,;Finland.;Department of Respiratory Medicine, Faculty of Medicine, Landspitali University;Hospital and University of Iceland, Reykjavik, Iceland.;University of Amsterdam, Amsterdam, The Netherlands.;Royal Brompton & Harefield NHS Foundation Trust, London, UK.;University of Athens, Athens, Greece.;University of Manchester, Manchester, UK.;Pneumology Service, Hospital Universitario Lucus Augusti, Lugo, Spain.;University of Sydney Medical School, Sydney, Australia.;UK Severe Asthma Network, Barts Health NHS Trust and Queen Mary University of;London, London, UK.;University Hospital "Sv. Ivan Rilski", Sofia, Bulgaria.;Bispebjerg Hospital, Copenhagen University, Copenhagen, Denmark.;The Catholic University of Korea, Seoul, South Korea.;Faculty of Pharmaceutical Sciences, University of British Columbia, Vancouver,;Canada.;Division of Allergy & Clinical Immunology, Department of Medicine, National;Jewish Health and Division of Allergy & Clinical Immunology, Department of;Internal Medicine, University of Colorado Hospital, Denver and Aurora, CO, USA.;Division of Pulmonary, Critical Care and Sleep Medicine, Asthma Program, National;Jewish Health, Denver, USA.;Optimum Patient Care, Cambridge, UK. dprice@opri.sg.;Observational and Pragmatic Research Institute, Singapore, Singapore.;dprice@opri.sg.;Academic Primary Care, Division of Applied Health Sciences, University of;Aberdeen, Polwarth Building, Foresterhill, Aberdeen, AB25 2ZD, UK.
Pubmed リンク	https://www.ncbi.nlm.nih.gov/pubmed/32819285/