Advertisement

Journal of Neurology

, Volume 265, Supplement 1, pp 3–8 | Cite as

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
Original Communication

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.

Keywords

Registries Vertigo Dizziness Quality of life Activities of daily living 

Notes

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.

Compliance with ethical standards

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.

References

  1. 1.
    Rieger A, Mansmann U, Maier W, Seitz L, Brandt T, Strupp M, Bayer O (2013) Management of patients with the cardinal symptom dizziness or vertigo. Gesundheitswesen.  https://doi.org/10.1055/s-0033-1357145 CrossRefPubMedGoogle Scholar
  2. 2.
    Milia N, Congiu A, Anagnostou P, Montinaro F, Capocasa M, Sanna E, Destro Bisol G (2012) Mine, yours, ours? Sharing data on human genetic variation. PLoS One 7(6):e37552.  https://doi.org/10.1371/journal.pone.0037552 CrossRefPubMedPubMedCentralGoogle Scholar
  3. 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
  4. 4.
    Brandt T, Zwergal A, Jahn K, Strupp M (2009) Integrated center for research and treatment of vertigo, balance and ocular motor disorders. Nervenarzt 80(8):875–876.  https://doi.org/10.1007/s00115-009-2812-3 CrossRefPubMedGoogle Scholar
  5. 5.
    Grill E, Muller T, Becker-Bense S, Gurkov R, Heinen F, Huppert D, Zwergal A, Strobl R (2017) DizzyReg: the prospective patient registry of the German Center for Vertigo and Balance Disorders. J Neurol 264(Suppl 1):34–36.  https://doi.org/10.1007/s00415-017-8438-7 CrossRefPubMedGoogle Scholar
  6. 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
  7. 7.
    Headache Classification Committee of the International Headache S (2013) The international classification of headache disorders, 3rd edition (beta version). Cephalalgia 33(9):629–808.  https://doi.org/10.1177/0333102413485658 CrossRefGoogle Scholar
  8. 8.
    Lempert T, Olesen J, Furman J, Waterston J, Seemungal B, Carey J, Bisdorff A, Versino M, Evers S, Newman-Toker D (2012) Vestibular migraine: diagnostic criteria. J Vestib Res 22(4):167–172.  https://doi.org/10.3233/VES-2012-0453 CrossRefGoogle Scholar
  9. 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 CrossRefGoogle Scholar
  10. 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 CrossRefGoogle Scholar
  11. 11.
    Strupp M, Lopez-Escamez JA, Kim JS, Straumann D, Jen JC, Carey J, Bisdorff A, Brandt T (2016) Vestibular paroxysmia: diagnostic criteria. J Vestib Res 26(5–6):409–415.  https://doi.org/10.3233/VES-160589 CrossRefGoogle Scholar
  12. 12.
    von Brevern M, Bertholon P, Brandt T, Fife T, Imai T, Nuti D, Newman-Toker D (2015) Benign paroxysmal positional vertigo: diagnostic criteria. J Vestib Res 25(3–4):105–117.  https://doi.org/10.3233/VES-150553 CrossRefGoogle Scholar
  13. 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
  14. 14.
    Jacobson G, Newman C (1990) The development of the dizziness handicap inventory. Arch Otolaryngol Head Neck Surg 116:424–427CrossRefGoogle Scholar
  15. 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
  16. 16.
    Kurre A, van Gool CJ, Bastiaenen CH, Gloor-Juzi T, Straumann D, de Bruin ED (2009) Translation, cross-cultural adaptation and reliability of the german version of the dizziness handicap inventory. Otol Neurotol 30(3):359–367.  https://doi.org/10.1097/MAO.0b013e3181977e09 CrossRefPubMedGoogle Scholar
  17. 17.
    Paul Rosenbaum, Donald Rubin (1983) The central role of the propensity score in observational studies for causal effects. Biometrika 70(1):41–55.  https://doi.org/10.2307/2335942 CrossRefGoogle Scholar
  18. 18.
    Ho D, Imai K, King G, Stuart E (2011) MatchIt: nonparametric preprocessing for parametric causal inference. J Stat Softw 42(8):1–28CrossRefGoogle Scholar
  19. 19.
    RStudio Team (2016) RStudio: integrated development environment for R. Boston, MAGoogle Scholar
  20. 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
  21. 21.
    Zanotto D, Mamuyac EM, Chambers AR, Nemer JS, Stafford JA, Agrawal SK, Lalwani AK (2017) Dizziness handicap inventory score is highly correlated with markers of gait disturbance. Otol Neurotol 38(10):1490–1499.  https://doi.org/10.1097/MAO.0000000000001586 CrossRefPubMedGoogle Scholar
  22. 22.
    Hsu LC, Hu HH, Wong WJ, Wang SJ, Luk YO, Chern CM (2005) Quality of life in elderly patients with dizziness: analysis of the Short-Form Health Survey in 197 patients. Acta Otolaryngol 125(1):55–59CrossRefGoogle Scholar
  23. 23.
    Aggarwal NT, Bennett DA, Bienias JL, Mendes de Leon CF, Morris MC, Evans DA (2000) The prevalence of dizziness and its association with functional disability in a biracial community population. J Gerontol A Biol Sci Med Sci 55(5):M288–M292CrossRefGoogle Scholar
  24. 24.
    Tinetti ME, Williams CS, Gill TM (2000) Health, functional, and psychological outcomes among older persons with chronic dizziness. J Am Geriatr Soc 48(4):417–421CrossRefGoogle Scholar
  25. 25.
    Penger M, Strobl R, Grill E (2017) Country-specific and individual determinants of dizziness in Europe: results from the Survey of Health Ageing and Retirement in Europe (SHARE). Public Health 149:1–10.  https://doi.org/10.1016/j.puhe.2017.04.002 CrossRefPubMedGoogle Scholar
  26. 26.
    Wallis JC, Rolando E, Borgman CL (2013) If we share data, will anyone use them? Data sharing and reuse in the long tail of science and technology. PLoS One 8(7):e67332.  https://doi.org/10.1371/journal.pone.0067332 CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Federer LM, Lu YL, Joubert DJ, Welsh J, Brandys B (2015) Biomedical data sharing and reuse: attitudes and practices of clinical and scientific research staff. PLoS One 10(6):e0129506.  https://doi.org/10.1371/journal.pone.0129506 CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Haeusermann T, Greshake B, Blasimme A, Irdam D, Richards M, Vayena E (2017) Open sharing of genomic data: who does it and why? PLoS One 12(5):e0177158.  https://doi.org/10.1371/journal.pone.0177158 CrossRefPubMedPubMedCentralGoogle Scholar
  29. 29.
    Gabriels K, Moerenhout T (2018) exploring entertainment medicine and professionalization of self-care: interview study among doctors on the potential effects of digital self-tracking. J Med Internet Res 20(1):e10.  https://doi.org/10.2196/jmir.8040 CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Institute for Medical Information Processing, Biometrics and EpidemiologyLudwig-Maximilians-Universität MünchenMunichGermany
  2. 2.German Center for Vertigo and Balance Disorders, University HospitalLudwig-Maximilians-Universität MünchenMunichGermany
  3. 3.Munich Center of Health SciencesLudwig-Maximilians-Universität MünchenMunichGermany
  4. 4.Department of Neurology, Faculty of MedicineDokuz Eylül UniversityIzmirTurkey
  5. 5.Department of Neurology, University HospitalLudwig-Maximilians-Universität MünchenMunichGermany
  6. 6.Institute for Clinical Neurosciences, University HospitalLudwig-Maximilians-Universität MünchenMunichGermany
  7. 7.Department of OtorhinolaryngologyUniversity of HelsinkiHelsinkiFinland
  8. 8.Department of NeurologyEge UniversityIzmirTurkey

Personalised recommendations