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