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Sci Data. 2018 Nov 27;5:180268. doi: 10.1038/sdata.2018.268.

Overview and experience of the YODA Project with clinical trial data sharing after 5 years.

Author information

1
Section of General Medicine, Department of Medicine, Yale School of Medicine, New Haven, CT, USA.
2
National Clinician Scholars Program, Yale School of Medicine, New Haven, CT, USA.
3
Department of Health Policy and Management, Yale School of Public Health, New Haven, CT, USA.
4
Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, CT, USA.
5
Johnson & Johnson, New Brunswick, NJ, USA.
6
Janssen Pharmaceutical Companies of Johnson & Johnson, High Wycombe, UK.
7
Section of Cardiovascular Medicine, Department of Medicine, Yale School of Medicine, New Haven, CT, USA.
8
Cancer Outcomes, Public Policy, and Effectiveness Research (COPPER) Center and Yale Cancer Center, Yale School of Medicine, New Haven, CT, USA.
9
Medtronic, Inc., Minneapolis, MN, USA.
10
Stonebank Medical Ltd., Banbury, UK.

Abstract

The Yale University Open Data Access (YODA) Project has facilitated access to clinical trial data since 2013. The purpose of this article is to provide an overview of the Project, describe key decisions that were made when establishing data sharing policies, and suggest how our experience and the experiences of our first two data generator partners, Medtronic, Inc. and Johnson & Johnson, can be used to enhance other ongoing or future initiatives.

PMID:
30480665
PMCID:
PMC6257043
DOI:
10.1038/sdata.2018.268
[Indexed for MEDLINE]
Free PMC Article

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