Title :

CHronic RhINOSinusitis Outcome Registry (CHRINOSOR): establishment of an international outcome registry driven by mHealth technology.

Author(s) :

Seys, S. F. [Auteur]
Hellings, P. W. [Auteur]
Alobid, I. [Auteur]
Backer, V. [Auteur]
Bequignon, Emilie [Auteur]
Centre Hospitalier Intercommunal de Créteil [CHIC]
Von Buchwald, C. [Auteur]
Cavaliere, C. [Auteur]
Coste, André [Auteur]
Centre Hospitalier Intercommunal de Créteil [CHIC]
Deneyer, L. [Auteur]
Diamant, Z. [Auteur]
Eckl-Dorna, J. [Auteur]
Fokkens, W. J. [Auteur]
Gane, S. [Auteur]
Gevaert, P. [Auteur]
Holbaek-Haase, C. [Auteur]
Holzmeister, C. [Auteur]
Hopkins, C. [Auteur]
Hox, V. [Auteur]
Huart, C. [Auteur]
Jankowski, R. [Auteur]
Jorissen, M. [Auteur]
Kjeldsen, A. [Auteur]
Knipps, L. [Auteur]
Lange, B. [Auteur]
Van Der Lans, R. [Auteur]
Laulajainen-Hongisto, A. [Auteur]
Larsen, K. [Auteur]
Liu, D. [Auteur]
Lund, V. [Auteur]
Mariën, G. [Auteur]
Masieri, S. [Auteur]
Mortuaire, Geoffrey [Auteur]
Institute for Translational Research in Inflammation - U 1286 [INFINITE]
Mullol, J. [Auteur]
Reitsma, S. [Auteur]
Rombaux, P. [Auteur]
Schneider, S. [Auteur]
Steinsvik, A. [Auteur]
Tomazic, P. V. [Auteur]
Toppila-Salmi, S. K. [Auteur]
Van Gerven, L. [Auteur]
Van Zele, T. [Auteur]
Virkkula, P. [Auteur]
Wagenmann, M. [Auteur]
Bachert, C. [Auteur]

Journal title :

Journal of Allergy and Clinical Immunology: In Practice

Abbreviated title :

J Allergy Clin Immunol Pract

Volume number :

11

Pages :

431-438

Publication date :

2022-10-26

ISSN :

2213-2201

English keyword(s) :

Chronic rhinosinusitis
Nasal polyps
Biologic therapy
Real-world evidence
Mobile health technology

HAL domain(s) :

Sciences du Vivant [q-bio]

English abstract : [en]

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 ...
Show more >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.Show less >

Language :

Anglais

Audience :

Internationale

Popular science :

Non

Administrative institution(s) :

Université de Lille
Inserm
CHU Lille

Collections :

• Institut de Recherche Translationnelle sur l'Inflammation (INFINITE) - U1286

Submission date :

2024-01-12T00:14:56Z
2024-03-28T10:44:22Z