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

Research output: Contribution to journalReviewResearchpeer-review

  • Sven F. Seys
  • Peter W. Hellings
  • Isam Alobid
  • Emilie Bequignon
  • 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

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 languageEnglish
JournalJournal of Allergy and Clinical Immunology: In Practice
Volume11
Issue number2
Pages (from-to)431-438.e2
ISSN2213-2198
DOIs
Publication statusPublished - 2023

Bibliographical note

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

    Research areas

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

ID: 370747295