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CHRINOSOR-Europe: A pan-European Chronic RhinoSinusitis Outcome Registry
Real-world evidence has gained an important place as data source to reveal the burden of disease and to demonstrate treatment effectiveness in chronic diseases. Galenus Health is driving this movement in the field of Chronic RhinoSinusitis with the first pan-European Outcome Registry enabled by digital health technology. “I have not seen such an initiative before and I am convinced that this approach will change the way we manage our clinical practice in future.”, says Prof. Dr. Claus Bachert, principal investigator of the Outcome Registry.
A consortium of leading academic medical experts of more than 12 centres across Europe has been composed and is implementing the Galenus Health digital platform with the aim to support patients in the self-management of their disease and to develop a database for scientific research. Both patient-reported outcome variables as well as clinical parameters are being collected.
What makes this Outcome Registry unique is that a standardised set of outcome variables are collected in a uniform and longitudinal manner. The co-morbidity aspect has been addressed by allowing patients with asthma or allergic rhinitis to report their respective lung or nose & eye symptoms in one mobile application. The App for patients feeds the database with information from in-between health care provider visits whereas the web-based dashboard allows the health care provider to amend with clinical data.
Dr. Sven Seys is coordinating this initiative as Research Lead of Galenus Health. “I am very much looking forward to the first data that will shed a light on the burden of uncontrolled chronic rhinosinusitis in 9 European countries.”, he says.