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

Publikation: Bidrag til tidsskriftReviewForskningfagfællebedømt

Standard

Chronic Rhinosinusitis Outcome Registry (CHRINOSOR) : Establishment of an International Outcome Registry Driven by mHealth Technology. / Seys, Sven F.; Hellings, Peter W.; Alobid, Isam; Backer, Vibeke; Bequignon, Emilie; von Buchwald, Christian; Cavaliere, Carlo; Coste, André; Deneyer, Lauren; Diamant, Zuzana; Eckl-Dorna, Julia; Fokkens, Wytske J.; Gane, Simon; Gevaert, Philippe; Holbaek-Haase, Christiane; Holzmeister, Clemens; Hopkins, Claire; Hox, Valérie; Huart, Caroline; Jankowski, Roger; Jorissen, Mark; Kjeldsen, Anette; Knipps, Lisa; Lange, Bibi; van der Lans, Rik; Laulajainen-Hongisto, Anu; Larsen, Kenneth; Liu, David T.; Lund, Valerie; Mariën, Gert; Masieri, Simonetta; Mortuaire, Geoffrey; Mullol, Joaquim; Reitsma, Sietze; Rombaux, Philippe; Schneider, Sven; Steinsvik, Andreas; Tomazic, Peter Valentin; Toppila-Salmi, Sanna K.; Van Gerven, Laura; Van Zele, Thibaut; Virkkula, Paula; Wagenmann, Martin; Bachert, Claus.

I: Journal of Allergy and Clinical Immunology: In Practice, Bind 11, Nr. 2, 2023, s. 431-438.e2.

Publikation: Bidrag til tidsskriftReviewForskningfagfællebedømt

Harvard

Seys, SF, Hellings, PW, Alobid, I, Backer, V, Bequignon, E, von Buchwald, C, Cavaliere, C, Coste, A, Deneyer, L, Diamant, Z, Eckl-Dorna, J, Fokkens, WJ, Gane, S, Gevaert, P, Holbaek-Haase, C, Holzmeister, C, Hopkins, C, Hox, V, Huart, C, Jankowski, R, Jorissen, M, Kjeldsen, A, Knipps, L, Lange, B, van der Lans, R, Laulajainen-Hongisto, A, Larsen, K, Liu, DT, Lund, V, Mariën, G, Masieri, S, Mortuaire, G, Mullol, J, Reitsma, S, Rombaux, P, Schneider, S, Steinsvik, A, Tomazic, PV, Toppila-Salmi, SK, Van Gerven, L, Van Zele, T, Virkkula, P, Wagenmann, M & Bachert, C 2023, 'Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology', Journal of Allergy and Clinical Immunology: In Practice, bind 11, nr. 2, s. 431-438.e2. https://doi.org/10.1016/j.jaip.2022.09.043

APA

Seys, S. F., Hellings, P. W., Alobid, I., Backer, V., Bequignon, E., von Buchwald, C., Cavaliere, C., Coste, A., Deneyer, L., Diamant, Z., Eckl-Dorna, J., Fokkens, W. J., Gane, S., Gevaert, P., Holbaek-Haase, C., Holzmeister, C., Hopkins, C., Hox, V., Huart, C., ... Bachert, C. (2023). Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology. Journal of Allergy and Clinical Immunology: In Practice, 11(2), 431-438.e2. https://doi.org/10.1016/j.jaip.2022.09.043

Vancouver

Seys SF, Hellings PW, Alobid I, Backer V, Bequignon E, von Buchwald C o.a. Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology. Journal of Allergy and Clinical Immunology: In Practice. 2023;11(2):431-438.e2. https://doi.org/10.1016/j.jaip.2022.09.043

Author

Seys, Sven F. ; Hellings, Peter W. ; Alobid, Isam ; Backer, Vibeke ; Bequignon, Emilie ; von Buchwald, Christian ; Cavaliere, Carlo ; Coste, André ; Deneyer, Lauren ; Diamant, Zuzana ; Eckl-Dorna, Julia ; Fokkens, Wytske J. ; Gane, Simon ; Gevaert, Philippe ; Holbaek-Haase, Christiane ; Holzmeister, Clemens ; Hopkins, Claire ; Hox, Valérie ; Huart, Caroline ; Jankowski, Roger ; Jorissen, Mark ; Kjeldsen, Anette ; Knipps, Lisa ; Lange, Bibi ; van der Lans, Rik ; Laulajainen-Hongisto, Anu ; Larsen, Kenneth ; Liu, David T. ; Lund, Valerie ; Mariën, Gert ; Masieri, Simonetta ; Mortuaire, Geoffrey ; Mullol, Joaquim ; Reitsma, Sietze ; Rombaux, Philippe ; Schneider, Sven ; Steinsvik, Andreas ; Tomazic, Peter Valentin ; Toppila-Salmi, Sanna K. ; Van Gerven, Laura ; Van Zele, Thibaut ; Virkkula, Paula ; Wagenmann, Martin ; Bachert, Claus. / Chronic Rhinosinusitis Outcome Registry (CHRINOSOR) : Establishment of an International Outcome Registry Driven by mHealth Technology. I: Journal of Allergy and Clinical Immunology: In Practice. 2023 ; Bind 11, Nr. 2. s. 431-438.e2.

Bibtex

@article{03865c3f30d040c1919afa5c4ed3dc49,
title = "Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology",
abstract = "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.",
keywords = "Biologic therapy, Chronic rhinosinusitis, Mobile health technology, Nasal polyps, Real-world evidence",
author = "Seys, {Sven F.} and Hellings, {Peter W.} and Isam Alobid and Vibeke Backer and Emilie Bequignon and {von Buchwald}, Christian and Carlo Cavaliere and Andr{\'e} Coste and Lauren Deneyer and Zuzana Diamant and Julia Eckl-Dorna and Fokkens, {Wytske J.} and Simon Gane and Philippe Gevaert and Christiane Holbaek-Haase and Clemens Holzmeister and Claire Hopkins and Val{\'e}rie Hox and Caroline Huart and Roger Jankowski and Mark Jorissen and Anette Kjeldsen and Lisa Knipps and Bibi Lange and {van der Lans}, Rik and Anu Laulajainen-Hongisto and Kenneth Larsen and Liu, {David T.} and Valerie Lund and Gert Mari{\"e}n and Simonetta Masieri and Geoffrey Mortuaire and Joaquim Mullol and Sietze Reitsma and Philippe Rombaux and Sven Schneider and Andreas Steinsvik and Tomazic, {Peter Valentin} and Toppila-Salmi, {Sanna K.} and {Van Gerven}, Laura and {Van Zele}, Thibaut and Paula Virkkula and Martin Wagenmann and Claus Bachert",
note = "Publisher Copyright: {\textcopyright} 2022 American Academy of Allergy, Asthma & Immunology",
year = "2023",
doi = "10.1016/j.jaip.2022.09.043",
language = "English",
volume = "11",
pages = "431--438.e2",
journal = "The Journal of Allergy and Clinical Immunology: In Practice",
issn = "2213-2198",
publisher = "Elsevier",
number = "2",

}

RIS

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

N1 - Publisher Copyright: © 2022 American Academy of Allergy, Asthma & Immunology

PY - 2023

Y1 - 2023

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.

KW - Biologic therapy

KW - Chronic rhinosinusitis

KW - Mobile health technology

KW - Nasal polyps

KW - Real-world evidence

UR - http://www.scopus.com/inward/record.url?scp=85146308005&partnerID=8YFLogxK

U2 - 10.1016/j.jaip.2022.09.043

DO - 10.1016/j.jaip.2022.09.043

M3 - Review

C2 - 36272718

AN - SCOPUS:85146308005

VL - 11

SP - 431-438.e2

JO - The Journal of Allergy and Clinical Immunology: In Practice

JF - The Journal of Allergy and Clinical Immunology: In Practice

SN - 2213-2198

IS - 2

ER -

ID: 370747295