Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology

. 2023 Feb ; 11 (2) : 431-438.e2. [epub] 20221019

Jazyk angličtina Země Spojené státy americké Médium print-electronic

Typ dokumentu časopisecké články, přehledy, práce podpořená grantem

Perzistentní odkaz   https://www.medvik.cz/link/pmid36272718
Odkazy

PubMed 36272718
DOI 10.1016/j.jaip.2022.09.043
PII: S2213-2198(22)01039-X
Knihovny.cz E-zdroje

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.

Allergy and Clinical Immunology Research Group Department of Microbiology Immunology and Transplantation KU Leuven Leuven Belgium; Department of Otorhinolaryngology Head and Neck Surgery University Hospitals Leuven Leuven Belgium; Department of Otorhinolaryngology Amsterdam University Medical Centres Academic Medical Center Amsterdam the Netherlands

Allergy and Clinical Immunology Research Group Department of Microbiology Immunology and Transplantation KU Leuven Leuven Belgium; Department of Otorhinolaryngology Head and Neck Surgery University Hospitals Leuven Leuven Belgium; Laboratory of Experimental Otorhinolaryngology Department of Neurosciences KU Leuven Leuven Belgium

Allergy and Clinical Immunology Research Group Department of Microbiology Immunology and Transplantation KU Leuven Leuven Belgium; Department of Respiratory Medicine and Allergology Institute for Clinical Science Skane University Hospital Lund University Lund Sweden; Department of Respiratory Medicine 1st Faculty of Medicine Charles University and Thomayer Hospital Prague Czech Republic; Department of Clin Pharm and Pharmacol University Groningen Univ Med Ctr Groningen Groningen the Netherlands

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 Amsterdam University Medical Centres Academic Medical Center Amsterdam the Netherlands

Department of Otorhinolaryngology Head and Neck Surgery and Audiology Rigshospitalet Copenhagen Denmark

Department of Otorhinolaryngology Head and Neck Surgery Helsinki University Hospital and University of Helsinki Helsinki Finland

Department of Otorhinolaryngology Head and Neck Surgery University Hospitals Leuven Leuven Belgium; Laboratory of Experimental Otorhinolaryngology Department of Neurosciences KU Leuven Leuven Belgium

Department of Otorhinolaryngology Head and Neck Surgery Vienna General Hospital Medical University of Vienna Vienna Austria

Department of Otorhinolaryngology Odense University Hospital Odense Denmark

Department of Otorhinolaryngology Universitätsklinikum Düsseldorf Dusseldorf Germany

Department of Rhinology Royal National Ear Nose Throat and Eastman Dental Hospital UCLH London United Kingdom

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

Otorhinolaryngology Head and Neck Department Huriez Hospital Centre Hospitalier Universitaire Lille Lille France

Research Department Galenus Health Belgium

Research Department Galenus Health Belgium; Allergy and Clinical Immunology Research Group Department of Microbiology Immunology and Transplantation KU Leuven Leuven Belgium

Rhinology and Skull Base Surgery Unit Otorhinolaryngology Department Hospital Clinic IDIBAPS Ciberes Barcelona Spain

Rhinology Unit and Smell Clinic ENT Department Hospital Clinic IDIBAPS CIBERES Barcelona Catalonia Spain

Service d'ORL et de chirurgie cervico faciale Centre Hospitalier Intercommunal de Créteil Créteil France

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

Upper Airways Research Laboratory Department of Otorhinolaryngology Ghent University Ghent Belgium; Division of ENT Diseases Department of Clinical Science Intervention and Technology Karolinska Institutet Stockholm Sweden

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