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Sharing clinical research data in the United States under the health insurance portability and accountability act and the privacy rule

Overview of attention for article published in Trials, November 2010
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Title
Sharing clinical research data in the United States under the health insurance portability and accountability act and the privacy rule
Published in
Trials, November 2010
DOI 10.1186/1745-6215-11-112
Pubmed ID
Authors

James D Miller

Abstract

Sharing of final research data from clinical research is an essential part of the scientific method. The U.S. National Institutes of Health require some grant applications to include plans for sharing final research data, which it defines as the factual materials necessary to document, support, and validate research findings. In the U.S., however, the Privacy Rule adopted under the Health Insurance Portability and Accountability Act impedes the sharing of final research data. In most situations, final research data may be shared only where all information that could possibly be used to identify the subject has been deleted, or where the subject has given authorization for specific research, or an Institutional Review Board has granted a waiver.

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Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 35 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United States 2 6%
Spain 1 3%
United Kingdom 1 3%
Unknown 31 89%

Demographic breakdown

Readers by professional status Count As %
Researcher 10 29%
Student > Master 5 14%
Student > Ph. D. Student 4 11%
Librarian 3 9%
Professor > Associate Professor 2 6%
Other 6 17%
Unknown 5 14%
Readers by discipline Count As %
Computer Science 8 23%
Medicine and Dentistry 5 14%
Agricultural and Biological Sciences 5 14%
Biochemistry, Genetics and Molecular Biology 3 9%
Psychology 2 6%
Other 5 14%
Unknown 7 20%