Multicenter data banking in management of dizzy patients: first results from the DizzyNet registry project

Eva Grill, Gülden Akdal, Sandra Becker-Bense, Steffen Hübinger, Doreen Huppert, Erna Kentala, Ralf Strobl, Andreas Zwergal, Nese Celebisoy
Journal of Neurology 2018, 265 (Suppl 1): 3-8

PURPOSE: Comprehensive phenotypical data across countries is needed to understand the determinants, prognosis and consequences of vestibular disease. The registry is a data repository for the members of the European DizzyNet. We report results from a pilot study using data from Turkey and Germany.

METHODS: The pilot study included a convenience sample of patients aged 18 or above referred to Ege University Medical School Hospital, Dokuz Eylül University Hospital, Izmir, Turkey, and the German Center for German Center for Vertigo and Balance Disorders, University on Munich, Germany, with symptoms of vertigo or dizziness. Health-related quality of life was assessed with the EQ5-D and the Dizziness Handicap Inventory (DHI). To obtain comparable groups we matched data from the two countries for age, sex and diagnosis by propensity score.

RESULTS: We included 80 adult patients, 40 from each country (60% female, mean age 54.1, SD 12.4). Matching was successful. Vestibular migraine (34%) was the most frequent diagnosis, followed by benign paroxysmal positional vertigo (29%) and Menière's disease (12%). Clinical signs and symptoms were comparable in both countries. Patients from Turkey were more likely to report headaches (65 vs. 32%) and to show gait unsteadiness (51 vs. 5%). Patients from Germany reported significantly higher quality of life and lower values of the DHI score.

CONCLUSIONS: Sharing data facilitates research, enhances translation from basic science into clinical applications, and increases transparency. The DizzyNet registry is a first step to data sharing in vestibular research across Europe.

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