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Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology
SF. Seys, PW. Hellings, I. Alobid, V. Backer, E. Bequignon, C. von Buchwald, C. Cavaliere, A. Coste, L. Deneyer, Z. Diamant, J. Eckl-Dorna, WJ. Fokkens, S. Gane, P. Gevaert, C. Holbaek-Haase, C. Holzmeister, C. Hopkins, V. Hox, C. Huart, R....
Jazyk angličtina Země Spojené státy americké
Typ dokumentu časopisecké články, přehledy, práce podpořená grantem
- MeSH
- chronická nemoc MeSH
- dospělí MeSH
- hormony kůry nadledvin terapeutické užití MeSH
- lidé MeSH
- nosní polypy * farmakoterapie MeSH
- rýma * terapie farmakoterapie MeSH
- sinusitida * terapie farmakoterapie MeSH
- Check Tag
- dospělí MeSH
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- přehledy MeSH
BACKGROUND: Real-world evidence (RWE) is a valuable instrument to better understand the patient journey and effectiveness of therapies. RWE on the prevalence of uncontrolled chronic rhinosinusitis (CRS) and CRS natural course of disease across Europe is scarce. In addition, there is limited RWE that enables comparison of the effectiveness of marketed therapies including topical or systemic corticosteroids, sinus surgery, or biologics. OBJECTIVE: To establish an international CHRonic rhINOSinusitis Outcome Registry (CHRINOSOR) based on real-world data collection enabled by mobile health technology. METHODOLOGY: A digital platform, Galenus Health, supporting patients and physicians in the management of chronic respiratory diseases, is used to collect data on patient profile, disease history, patient outcomes, and a set of relevant clinical outcomes. Adult patients with a diagnosis of CRS are eligible for inclusion. RESULTS: A collaborative scientific network of 17 university ear-nose-throat (ENT) clinics from 10 European countries has been established with the aim to collect real-world data in a longitudinal and standardized manner. The Galenus Health digital platform is currently being implemented in these ENT clinics taking into account legal, privacy, and data security aspects. Up to 300 patients have already been included. CONCLUSIONS: CHRINOSOR is a collaborative effort that aims at improving our understanding of CRS, its comorbidities, and the effectiveness of its treatments. Ultimately, these insights will guide us as scientific community to develop future care pathways informed by RWE.
Department of General ORL Head and Neck Surgery Medical University of Graz Graz Austria
Department of Oral and Maxillofacial Sciences Sapienza University Rome Italy
Department of Otorhinolaryngology Akershus University Hospital Lorenskog Norway
Department of Otorhinolaryngology Head and Neck Surgery University Hospitals Leuven Leuven Belgium
Department of Otorhinolaryngology Odense University Hospital Odense Denmark
Department of Otorhinolaryngology Universitätsklinikum Düsseldorf Dusseldorf Germany
Department of Sense Organs Sapienza University Rome Italy
ENT Department Guy's and St Thomas' NHS Foundation Trust London United Kingdom
ENT Department Hospital of Nancy Brabois ILM University Lorraine Nancy France
Laboratory of Experimental Otorhinolaryngology Department of Neurosciences KU Leuven Leuven Belgium
Research Department Galenus Health Belgium
Service d'Otorhinolaryngologie Cliniques Universitaires Saint Luc Brussels Belgium
Skin and Allergy Hospital Helsinki University Hospital and University of Helsinki Helsinki Finland
Upper Airways Research Laboratory Department of Otorhinolaryngology Ghent University Ghent Belgium
Citace poskytuje Crossref.org
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- $a 10.1016/j.jaip.2022.09.043 $2 doi
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- $a Seys, Sven F $u Research Department, Galenus Health, Belgium; Allergy and Clinical Immunology Research Group, Department of Microbiology, Immunology and Transplantation, KU Leuven, Leuven, Belgium. Electronic address: sven.seys@galenus.health
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- $a Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology / $c SF. Seys, PW. Hellings, I. Alobid, V. Backer, E. Bequignon, C. von Buchwald, C. Cavaliere, A. Coste, L. Deneyer, Z. Diamant, J. Eckl-Dorna, WJ. Fokkens, S. Gane, P. Gevaert, C. Holbaek-Haase, C. Holzmeister, C. Hopkins, V. Hox, C. Huart, R. Jankowski, M. Jorissen, A. Kjeldsen, L. Knipps, B. Lange, R. van der Lans, A. Laulajainen-Hongisto, K. Larsen, DT. Liu, V. Lund, G. Mariën, S. Masieri, G. Mortuaire, J. Mullol, S. Reitsma, P. Rombaux, S. Schneider, A. Steinsvik, PV. Tomazic, SK. Toppila-Salmi, L. Van Gerven, T. Van Zele, P. Virkkula, M. Wagenmann, C. Bachert
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- $a BACKGROUND: Real-world evidence (RWE) is a valuable instrument to better understand the patient journey and effectiveness of therapies. RWE on the prevalence of uncontrolled chronic rhinosinusitis (CRS) and CRS natural course of disease across Europe is scarce. In addition, there is limited RWE that enables comparison of the effectiveness of marketed therapies including topical or systemic corticosteroids, sinus surgery, or biologics. OBJECTIVE: To establish an international CHRonic rhINOSinusitis Outcome Registry (CHRINOSOR) based on real-world data collection enabled by mobile health technology. METHODOLOGY: A digital platform, Galenus Health, supporting patients and physicians in the management of chronic respiratory diseases, is used to collect data on patient profile, disease history, patient outcomes, and a set of relevant clinical outcomes. Adult patients with a diagnosis of CRS are eligible for inclusion. RESULTS: A collaborative scientific network of 17 university ear-nose-throat (ENT) clinics from 10 European countries has been established with the aim to collect real-world data in a longitudinal and standardized manner. The Galenus Health digital platform is currently being implemented in these ENT clinics taking into account legal, privacy, and data security aspects. Up to 300 patients have already been included. CONCLUSIONS: CHRINOSOR is a collaborative effort that aims at improving our understanding of CRS, its comorbidities, and the effectiveness of its treatments. Ultimately, these insights will guide us as scientific community to develop future care pathways informed by RWE.
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