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

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

doi:10.1016/j.jaip.2022.09.043

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

Sven F Seys^*
, Peter W Hellings
, Isam Alobid
, Vibeke Backer
, Emilie Bequignon
, Christian von Buchwald
, Carlo Cavaliere
, André Coste
, Lauren Deneyer
, Zuzana Diamant
, Julia Eckl-Dorna
, Wytske J Fokkens
, Simon Gane
, Philippe Gevaert
, Christiane Holbaek-Haase
, Clemens Holzmeister
, Claire Hopkins
, Valérie Hox
, Caroline Huart
, Roger Jankowski

Mark Jorissen, Anette Kjeldsen, Lisa Knipps, Bibi Lange, Rik van der Lans, Anu Laulajainen-Hongisto, Kenneth Larsen, David T Liu, Valerie Lund, Gert Mariën, Simonetta Masieri, Geoffrey Mortuaire, Joaquim Mullol, Sietze Reitsma, Philippe Rombaux, Sven Schneider, Andreas Steinsvik, Peter-Valentin Tomazic, Sanna K Toppila-Salmi, Laura Van Gerven, Thibaut Van Zele, Paula Virkkula, Martin Wagenmann, Claus Bachert

^*Corresponding author for this work

University of Leuven
University Hospitals Leuven
Hospital Clinic of Barcelona
Rigshospitalet
Centre Hospitalier Intercommunal de Creteil
Sapienza University of Rome
Lund University
Medical University of Vienna
Amsterdam UMC - University of Amsterdam
University College London Hospitals NHS Foundation Trust
Ghent University Hospital
Medical University of Graz
University of Lorraine
Department of Otorhinolaryngology, Sint-Jozefskliniek, Izegem, Belgium.
Helsinki University Hospital
Huriez Hospital
Akershus University Hospital

Research output: Contribution to journal › Journal article › Research › peer-review

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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.

Original language	English
Journal	The journal of allergy and clinical immunology. In practice
Volume	11
Issue number	2
Pages (from-to)	431-438.e2
ISSN	2213-2198
DOIs	https://doi.org/10.1016/j.jaip.2022.09.043
Publication status	Published - Feb 2023

Bibliographical note

Keywords

Adult
Humans
Nasal Polyps/drug therapy
Rhinitis/therapy
Adrenal Cortex Hormones/therapeutic use
Sinusitis/therapy
Chronic Disease

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10.1016/j.jaip.2022.09.043

Open Access VersionAccepted manuscript, 282 KBLicence: CC BY-NC-ND

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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. The journal of allergy and clinical immunology. In practice, 11(2), 431-438.e2. https://doi.org/10.1016/j.jaip.2022.09.043

@article{51cf7ab4267a496b9663a90e55ad1246,

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 = "Adult, Humans, Nasal Polyps/drug therapy, Rhinitis/therapy, Adrenal Cortex Hormones/therapeutic use, Sinusitis/therapy, Chronic Disease",

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 Peter-Valentin Tomazic and Toppila-Salmi, \{Sanna K\} and \{Van Gerven\}, Laura and \{Van Zele\}, Thibaut and Paula Virkkula and Martin Wagenmann and Claus Bachert",

year = "2023",

month = feb,

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 = "American Academy of Allergy, Asthma and Immunology",

number = "2",

}

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, P-V, 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', The journal of allergy and clinical immunology. In practice, vol. 11, no. 2, pp. 431-438.e2. https://doi.org/10.1016/j.jaip.2022.09.043

Chronic Rhinosinusitis Outcome Registry (CHRINOSOR): Establishment of an International Outcome Registry Driven by mHealth Technology. / Seys, Sven F; Hellings, Peter W; Alobid, Isam et al.
In: The journal of allergy and clinical immunology. In practice, Vol. 11, No. 2, 02.2023, p. 431-438.e2.

Research output: Contribution to journal › Journal article › Research › peer-review

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 - 2023/2

Y1 - 2023/2

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 - Adult

KW - Humans

KW - Nasal Polyps/drug therapy

KW - Rhinitis/therapy

KW - Adrenal Cortex Hormones/therapeutic use

KW - Sinusitis/therapy

KW - Chronic Disease

U2 - 10.1016/j.jaip.2022.09.043

DO - 10.1016/j.jaip.2022.09.043

M3 - Journal article

C2 - 36272718

SN - 2213-2198

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

IS - 2

ER -

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

Abstract

Bibliographical note

Keywords

Documents & Links

SDU Link

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Cite this