Data sharing

Why share data?

Making clinical trial data sets available to investigators beyond the original research team can improve patient care, advance medical knowledge and provide better value for money from health research.

Data generated through participation of patients and the public should be put to maximum use by the research community and, whenever possible, translated to deliver patient benefit. Data sharing benefits numerous research-related activities: reproducing analyses; testing secondary hypotheses; developing and evaluating novel statistical methods; teaching; aiding design of future trials; meta-analyses; and helping to prevent error, fraud and selective reporting.

Data sharing achieves many important goals for the scientific community, such as:

  • Reinforcing open scientific inquiry.
  • Encouraging diversity of analysis and opinion.
  • Promoting new research, testing of new or alternative hypotheses and methods of analysis.
  • Supporting studies on data collection methods and measurement.
  • Facilitating education of new researchers.

Data sharing and the NIHR Journals Library

When you submit your final report we will ask you to make a statement about your data archiving position. Possible responses might state that all available data:

  • Can be obtained from the corresponding author.
  • Is included as an appendix to the report.
  • Can be obtained from the corresponding author via the (name of) repository.

If you have deposited (or intend to deposit) data from your study into a data sharing repository, please supply the URL to the data archive so that when your report is published, the link to the data archive can be displayed on the NIHR Journals Library website alongside your published report. As an example of how this works, please see issue 17:10 of Health Technology Assessment "The CRASH-2 trial: a randomised controlled trial and economic evaluation of the effects of tranexamic acid on death, vascular occlusive events and transfusion requirement in bleeding trauma patients"

Confidentiality and Anonymity

For research involving samples or information from human participants, data must be managed and shared in a way which safeguards the confidentiality and anonymity of participants and is consistent with the terms of consent signed by participants. Data sharing does not necessarily mean public access. Data can be shared on request or via registration if deposited in an archive.

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