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

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Abstract

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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Funding

This work was supported by funds from the German Federal Ministry of Education and Research under the grant code 01EO1401 as part of the European DizzyNet. The authors bear full responsibility for the content of this publication.

Author information

Authors and Affiliations

  1. Institute for Medical Information Processing, Biometrics and Epidemiology, Ludwig-Maximilians-Universität München, Marchioninistr 17, 81377, Munich, Germany

    Eva Grill, Steffen Hübinger & Ralf Strobl

  2. German Center for Vertigo and Balance Disorders, University Hospital, Ludwig-Maximilians-Universität München, Munich, Germany

    Eva Grill, Sandra Becker-Bense, Steffen Hübinger, Doreen Huppert, Ralf Strobl & Andreas Zwergal

  3. Munich Center of Health Sciences, Ludwig-Maximilians-Universität München, Munich, Germany

    Eva Grill

  4. Department of Neurology, Faculty of Medicine, Dokuz Eylül University, Izmir, Turkey

    Gülden Akdal

  5. Department of Neurology, University Hospital, Ludwig-Maximilians-Universität München, Munich, Germany

    Sandra Becker-Bense & Andreas Zwergal

  6. Institute for Clinical Neurosciences, University Hospital, Ludwig-Maximilians-Universität München, Munich, Germany

    Doreen Huppert

  7. Department of Otorhinolaryngology, University of Helsinki, Helsinki, Finland

    Erna Kentala

  8. Department of Neurology, Ege University, Izmir, Turkey

    Nese Celebisoy

Authors
  1. Eva Grill
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  2. Gülden Akdal
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  3. Sandra Becker-Bense
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  4. Steffen Hübinger
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  7. Ralf Strobl
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Corresponding author

Correspondence to Eva Grill.

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Conflicts of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Ethical standards

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.

Additional information

This manuscript is part of a supplement sponsored by the German Federal Ministry of Education and Research within the funding initiative for integrated research and treatment centers.

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Grill, E., Akdal, G., Becker-Bense, S. et al. Multicenter data banking in management of dizzy patients: first results from the DizzyNet registry project. J Neurol 265 (Suppl 1), 3–8 (2018). https://doi.org/10.1007/s00415-018-8864-1

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  • DOI: https://doi.org/10.1007/s00415-018-8864-1

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