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Guidelines on the sharing of individual participant data from publicly funded trials

The distribution of clinical data is a hot topic at the moment but the sharing of individual participant data is a more sensitive issue. Towards the end of 2015 BMC Medicine published guidelines to help develop a responsible approach to this concept.

In a recent blog, Dan Bridge from Cancer Research UK outlined the significance of sharing individual participant data and how these guidelines will aid the process. A key factor for Cancer Research UK is ensuring maximum value is obtained from any research that is funded by public money. As the sharing of data can benefit research and researchers alike, the charity sees it as an important part of the study. However, safeguards must be in place to ensure that patients are protected. Therefore, the generation of standards for data handlers and researchers to follow should make the process simpler, whilst maintaining privacy. The balance between appropriateness of sharing individual patient results and the importance of further research should be considered. The guidelines propose a collaborative approach between trial units and researchers.

With patient benefit as the ultimate aim, Cancer Research UK encourages other public research funders to adopt these guidelines to maximise data sharing and improve the transparency of current research.

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Ryan co-runs Aspire Scientific, a dynamic, forward-thinking medical writing agency. Ryan has a passion for innovation, science and ethical communication.

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