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Approaches and Costs for Sharing Clinical Research Data

Erin E. Wilhelm, MPH1; Emily Oster, PhD2; Ira Shoulson, MD3
[+] Author Affiliations
1Department of Pharmacology and Physiology, Program for Regulatory Science and Medicine, Georgetown University, Washington, DC
2University of Chicago Booth School of Business, Chicago, Illinois
3Departments of Neurology, Pharmacology, and Human Science, Program for Regulatory Science and Medicine, Georgetown University
JAMA. 2014;311(12):1201-1202. doi:10.1001/jama.2014.850.
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Extract

The generation, dissemination, and sharing of research data are key ingredients in contributing to scientific progress and the public good. Data sharing has been encouraged to facilitate open science within the clinical research enterprise, improve the development of drugs and devices, and benefit public health.1 But sharing data is complex. Investigators generally tend to guard research data to retain ownership and property rights, avoid competition, protect confidentiality and privacy, or avoid misuse by unqualified persons. Sharing research data also comes at a cost to the sharer. This Viewpoint examines some approaches and cost considerations involved in sharing participant-level clinical research data.

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