Multicenter data banking in management of dizzy patients: first results from the DizzyNet registry project
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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.
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.
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.
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.
KeywordsRegistries Vertigo Dizziness Quality of life Activities of daily living
Compliance with ethical standards
Conflicts of interest
On behalf of all authors, the corresponding author states that there is no conflict of interest.
All human and animal studies have been approved by the appropriate ethics committee and have, therefore, been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. We thank Amanda Phillips for copy-editing of the final manuscript.
- 3.Peat G, Riley RD, Croft P, Morley KI, Kyzas PA, Moons KG, Perel P, Steyerberg EW, Schroter S, Altman DG, Hemingway H, Group P (2014) Improving the transparency of prognosis research: the role of reporting, data sharing, registration, and protocols. PLoS Med 11(7):e1001671. https://doi.org/10.1371/journal.pmed.1001671 CrossRefPubMedPubMedCentralGoogle Scholar
- 6.Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG (2009) Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42(2):377–381. https://doi.org/10.1016/j.jbi.2008.08.010 CrossRefPubMedGoogle Scholar
- 9.Staab JP, Eckhardt-Henn A, Horii A, Jacob R, Strupp M, Brandt T, Bronstein A (2017) Diagnostic criteria for persistent postural-perceptual dizziness (PPPD): consensus document of the committee for the Classification of Vestibular Disorders of the Barany Society. J Vestib Res 27(4):191–208. https://doi.org/10.3233/VES-170622 CrossRefPubMedGoogle Scholar
- 10.Strupp M, Kim JS, Murofushi T, Straumann D, Jen JC, Rosengren SM, Della Santina CC, Kingma H (2017) Bilateral vestibulopathy: diagnostic criteria consensus document of the Classification Committee of the Barany Society. J Vestib Res 27(4):177–189. https://doi.org/10.3233/VES-170619 CrossRefPubMedGoogle Scholar
- 13.Greiner W, Weijnen T, Nieuwenhuizen M, Oppe S, Badia X, Busschbach J, Buxton M, Dolan P, Kind P, Krabbe P, Ohinmaa A, Parkin D, Roset M, Sintonen H, Tsuchiya A, de Charro F (2003) A single European currency for EQ-5D health states. Results from a six-country study. Eur J Health Econ 4(3):222–231. https://doi.org/10.1007/s10198-003-0182-5 CrossRefPubMedGoogle Scholar
- 15.Ardic FN, Topuz B, Kara CO (2006) Impact of multiple etiology on dizziness handicap. Otol Neurotol 27(5):676–680. https://doi.org/10.1097/01.mao.0000226292.49789.c9 CrossRefPubMedGoogle Scholar
- 19.RStudio Team (2016) RStudio: integrated development environment for R. Boston, MAGoogle Scholar
- 20.Weidt S, Bruehl AB, Straumann D, Hegemann SC, Krautstrunk G, Rufer M (2014) Health-related quality of life and emotional distress in patients with dizziness: a cross-sectional approach to disentangle their relationship. BMC Health Serv Res 14:317. https://doi.org/10.1186/1472-6963-14-317 CrossRefPubMedPubMedCentralGoogle Scholar