TY - JOUR
T1 - Chronic Rhinosinusitis Outcome Registry (CHRINOSOR)
T2 - Establishment of an International Outcome Registry Driven by mHealth Technology
AU - Seys, Sven F.
AU - Hellings, Peter W.
AU - Alobid, Isam
AU - Backer, Vibeke
AU - Bequignon, Emilie
AU - von Buchwald, Christian
AU - Cavaliere, Carlo
AU - Coste, André
AU - Deneyer, Lauren
AU - Diamant, Zuzana
AU - Eckl-Dorna, Julia
AU - Fokkens, Wytske J.
AU - Gane, Simon
AU - Gevaert, Philippe
AU - Holbaek-Haase, Christiane
AU - Holzmeister, Clemens
AU - Hopkins, Claire
AU - Hox, Valérie
AU - Huart, Caroline
AU - Jankowski, Roger
AU - Jorissen, Mark
AU - Kjeldsen, Anette
AU - Knipps, Lisa
AU - Lange, Bibi
AU - van der Lans, Rik
AU - Laulajainen-Hongisto, Anu
AU - Larsen, Kenneth
AU - Liu, David T.
AU - Lund, Valerie
AU - Mariën, Gert
AU - Masieri, Simonetta
AU - Mortuaire, Geoffrey
AU - Mullol, Joaquim
AU - Reitsma, Sietze
AU - Rombaux, Philippe
AU - Schneider, Sven
AU - Steinsvik, Andreas
AU - Tomazic, Peter-Valentin
AU - Toppila-Salmi, Sanna K.
AU - van Gerven, Laura
AU - van Zele, Thibaut
AU - Virkkula, Paula
AU - Wagenmann, Martin
AU - Bachert, Claus
PY - 2022
Y1 - 2022
N2 - 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.
AB - 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.
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85146308005&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/36272718
U2 - https://doi.org/10.1016/j.jaip.2022.09.043
DO - https://doi.org/10.1016/j.jaip.2022.09.043
M3 - Review article
C2 - 36272718
SN - 2213-2198
JO - Journal of Allergy and Clinical Immunology: In Practice
JF - Journal of Allergy and Clinical Immunology: In Practice
ER -