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Ethical and legal constraints on data sharing between countries in multinational epidemiological studies in Europe report from a joint workshop of the European League Against Rheumatism standing committee on epidemiology with the “AutoCure” project
  1. A Zink1,
  2. A J Silman2
  1. 1
    German Rheumatism Research Centre, Berlin, Germany
  2. 2
    Arthritis Research Campaign, University of Manchester, Manchester, UK
  1. Professor A Zink, Epidemiology Unit, German Rheumatism Research Centre, Charitéplatz 1, 10117 Berlin, Germany; Zink{at}DRFZ.de

Abstract

Background: We report on a workshop on ethical and legal constraints on data sharing between countries in multinational epidemiologic research in Europe that was held in January 2007 in Potsdam, Germany. The participants were experienced epidemiologic and clinical researchers from eight European countries. The aim of the workshop was to share current knowledge on the above-mentioned topics, to identify areas for joint action and to enhance the likelihood of success for the new funding programmes.

Methods: Workshop sessions and review of findings.

Results: Key elements and recommendations have been drawn up.

Conclusions: Epidemiologic and clinical studies are increasingly planned and conducted on a European level, and funds are available for this kind of studies. However, data sharing in multi-centre clinical and epidemiological studies is hampered by the different legal and ethical constraints individual national researchers face.

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Footnotes

  • Competing interests: None declared.

  • Funding: The workshop was jointly funded by European League Against Rheumatism (EULAR) and the AutoCure project.

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