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Approaches and Costs for Sharing Clinical Research Data

Approaches and Costs for Sharing Clinical Research Data Opinion Approaches and Costs for Sharing VIEWPOINT Clinical Research Data The generation, dissemination, and sharing of re- are entered promptly into a quality-controlled data- Erin E. Wilhelm, MPH Department of search data are key ingredients in contributing to scien- base, monitored to ensure ADNI standards, and, within Pharmacology and tific progress and the public good. Data sharing has been days of deposit, made accessible via a password- Physiology, Program encouraged to facilitate open science within the clini- protected website to individuals with research creden- for Regulatory Science cal research enterprise, improve the development of tials who agree not to attempt to identify research par- and Medicine, Georgetown University, drugs and devices, and benefit public health. But shar- ticipants. Washington, DC. ingdataiscomplex.Investigatorsgenerallytendtoguard Researchers who access ADNI data also agree to research data to retain ownership and property rights, upload new analyses to the ADNI database and cite Emily Oster, PhD avoid competition, protect confidentiality and privacy, ADNI in the author line of related publications. More University of Chicago or avoid misuse by unqualified persons. Sharing re- than 4000 investigators have accessed ADNI data, Booth School of Business, Chicago, search data also comes at a cost to the sharer. This View- http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA American Medical Association

Approaches and Costs for Sharing Clinical Research Data

JAMA , Volume 311 (12) – Mar 26, 2014

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Publisher
American Medical Association
Copyright
Copyright 2014 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.
ISSN
0098-7484
eISSN
1538-3598
DOI
10.1001/jama.2014.850
pmid
24556937
Publisher site
See Article on Publisher Site

Abstract

Opinion Approaches and Costs for Sharing VIEWPOINT Clinical Research Data The generation, dissemination, and sharing of re- are entered promptly into a quality-controlled data- Erin E. Wilhelm, MPH Department of search data are key ingredients in contributing to scien- base, monitored to ensure ADNI standards, and, within Pharmacology and tific progress and the public good. Data sharing has been days of deposit, made accessible via a password- Physiology, Program encouraged to facilitate open science within the clini- protected website to individuals with research creden- for Regulatory Science cal research enterprise, improve the development of tials who agree not to attempt to identify research par- and Medicine, Georgetown University, drugs and devices, and benefit public health. But shar- ticipants. Washington, DC. ingdataiscomplex.Investigatorsgenerallytendtoguard Researchers who access ADNI data also agree to research data to retain ownership and property rights, upload new analyses to the ADNI database and cite Emily Oster, PhD avoid competition, protect confidentiality and privacy, ADNI in the author line of related publications. More University of Chicago or avoid misuse by unqualified persons. Sharing re- than 4000 investigators have accessed ADNI data, Booth School of Business, Chicago, search data also comes at a cost to the sharer. This View-

Journal

JAMAAmerican Medical Association

Published: Mar 26, 2014

References