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