Open access data sharing
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Open access data sharing allows anyone to access and use the dataset. For the data to be made publicly available, all information, both direct and indirect, that could lead to a person being identified must be removed (this is called de-identification or anonymization). Datasets from rare disease communities require the removal of more information than for more common disease communities to safely protect a person’s identity. Although necessary, this level of de-identification of data can limit the usefulness of the dataset.

Sourced From
Data Sharing Elements and Activities from “Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities.” [Internet, 2014]
Learn More
Data sharing in clinical trials – practical guidance on anonymising trial datasets [2018 published article]

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