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Open Access Platforms for Sharing Clinical Trial Data

Joseph S. Ross, MD, MHS1; Harlan M. Krumholz, MD, SM1
[+] Author Affiliations
1Yale School of Medicine, New Haven, Connecticut
JAMA. 2016;316(6):666. doi:10.1001/jama.2016.8794.
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To the Editor In their Research Letter, Dr Navar and colleagues1 evaluated how many clinical trials were publicly available to the research community through 3 open access platforms: ClinicalStudyDataRequest.com, the Yale University Open Data Access (YODA) Project, and the Supporting Open Access for Researchers (SOAR) Initiative. They found that although more than 3000 trials were available through these open data platforms, only 15.5% had been requested by a limited number of investigators. This study provides early insights into these clinical trial data sharing efforts but is likely premature considering that ClinicalStudyDataRequest.com began accepting requests in May 2013 and the YODA Project in July 2013. However, these dates oversimplify data availability. Although ClinicalStudyDataRequest.com now makes data available on the behalf of 13 different medical product manufacturers, at its inception the site only made available approximately 200 clinical trials sponsored by GlaxoSmithKline.2 Similarly, the YODA Project initially made only 17 clinical trials from Medtronic available, and it was not until October 2014 that the steadily increasing number of trials from Johnson & Johnson began to be made available.3


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August 9, 2016
Ann Marie Navar, MD, PhD; Michael J. Pencina, PhD; Eric D. Peterson, MD, MPH
1Duke Clinical Research Institute, Duke University Medical Center, Durham, North Carolina
JAMA. 2016;316(6):666-667. doi:10.1001/jama.2016.8797.
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