Discoverability of information on clinical trial data-sharing platforms




clinical trials, data sharing platforms, data sharing


Objective: This study was intended to (1) provide clinical trial data-sharing platform designers with insight into users’ experiences when attempting to evaluate and access datasets, (2) spark conversations about improving the transparency and discoverability of clinical trial data, and (3) provide a partial view of the current information-sharing landscape for clinical trials.

Methods: We evaluated preview information provided for 10 datasets in each of 7 clinical trial data-sharing platforms between February and April 2019. Specifically, we evaluated the platforms in terms of the extent to which we found (1) preview information about the dataset, (2) trial information on and other external websites, and (3) evidence of the existence of trial protocols and data dictionaries.

Results: All seven platforms provided data previews. Three platforms provided information on data file format (e.g., CSV, SAS file). Three allowed batch downloads of datasets (i.e., downloading multiple datasets with a single request), whereas four required separate requests for each dataset. All but one platform linked to records, but only one platform had records that linked back to the platform. Three platforms consistently linked to external websites and primary publications. Four platforms provided evidence of the presence of a protocol, and six platforms provided evidence of the presence of data dictionaries.

Conclusions: More work is needed to improve the discoverability, transparency, and utility of information on clinical trial data-sharing platforms. Increasing the amount of dataset preview information available to users could considerably improve the discoverability and utility of clinical trial data. 


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Original Investigation