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Updated: Mar 30, 2026

Establishment of a Clinic-based Biorepository
Published on: May 29, 2017
Opening clinical trial data: are the voluntary data-sharing portals enough?
Nophar Geifman1, Jennifer Bollyky2, Sanchita Bhattacharya1
1Institute for Computational Health Sciences, University of California San Francisco, Mission Hall, 550 16th Street, 4th Floor, San Francisco, CA, 94158-2549, USA.
Sharing clinical trial data aids research reproducibility and study design. However, ensuring data accessibility, quality, and usability remains a critical challenge requiring further solutions.
Area of Science:
- Clinical research
- Data science
- Medical informatics
Background:
- Clinical trials generate valuable data for scientific advancement and patient benefit.
- Timely public release of raw patient-level clinical trial data is increasingly advocated.
- Key benefits include enhanced study reproducibility, robust meta-analyses, and improved future study designs.
Purpose of the Study:
- To evaluate the accessibility, quality, and usability of shared clinical trial data.
- To discuss experiences with major clinical trial data dissemination platforms.
- To identify challenges and propose solutions for effective clinical trial data sharing.
Main Methods:
- Review of experiences with two major platforms for storing and disseminating clinical trial data.
- Analysis of issues encountered in data accessibility, quality, and usability.
- Development of suggested solutions for identified problems.
Main Results:
- Significant challenges exist regarding the accessibility, quality, and usability of shared clinical trial data.
- Current major platforms present specific issues that hinder optimal data utilization.
- Experiences highlight the need for improved data management and dissemination practices.
Conclusions:
- Addressing data accessibility, quality, and usability is crucial for maximizing the value of shared clinical trial data.
- Improvements in platform functionalities and data curation are necessary.
- Further research and community consensus are needed to overcome existing barriers in clinical trial data sharing.
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