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Discoverability of information on clinical trial data-sharing platforms
1paije.wilson@wisc.edu, National Library of Medicine Associate Fellow, National Library of Medicine, Bethesda, MD (at time of study). Health Sciences Librarian, University of Wisconsin-Madison, Madison, WI.
Journal of the Medical Library Association : JMLA
|July 21, 2021
Summary
Improving clinical trial data sharing requires better dataset previews and transparency. Enhanced discoverability and utility of clinical trial data can be achieved through more accessible information on data-sharing platforms.
Area of Science:
- Biomedical Informatics
- Clinical Research
- Data Science
Background:
- Clinical trial data sharing is crucial for research transparency and reproducibility.
- Existing data-sharing platforms vary in their ability to provide comprehensive information about datasets.
- User experience in accessing and evaluating clinical trial data is a key concern for researchers.
Purpose of the Study:
- To evaluate user experiences with clinical trial data-sharing platforms.
- To assess the transparency and discoverability of clinical trial data.
- To understand the current landscape of clinical trial data information sharing.
Main Methods:
- Evaluated preview information for 10 datasets across 7 data-sharing platforms (February-April 2019).
- Assessed availability of dataset previews, external trial information (ClinicalTrials.gov), and supporting documents (protocols, data dictionaries).
Main Results:
- All platforms offered data previews, but only three specified data file formats.
- Three platforms supported batch downloads; four required individual dataset requests.
- Most platforms linked to ClinicalTrials.gov, but few linked back; protocol and data dictionary availability varied.
Conclusions:
- Clinical trial data-sharing platforms need improvement in discoverability, transparency, and utility.
- Increasing the availability of dataset preview information is essential for enhancing data accessibility and usability.
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