Open Data Revolution in Clinical Research: Opportunities and Challenges

Efforts for sharing individual clinical data are gaining momentum due to a heightened recognition that integrated data sets can catalyze biomedical discoveries and drug development. Among the benefits are the fact that data sharing can help generate and investigate new research hypothesis beyond tho...

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Published inClinical and translational science Vol. 13; no. 4; pp. 665 - 674
Main Authors Shahin, Mohamed H., Bhattacharya, Sanchita, Silva, Diego, Kim, Sarah, Burton, Jackson, Podichetty, Jagdeep, Romero, Klaus, Conrado, Daniela J.
Format Journal Article
LanguageEnglish
Published United States John Wiley & Sons, Inc 01.07.2020
John Wiley and Sons Inc
Wiley
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Alzheimer's disease
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Abstract Efforts for sharing individual clinical data are gaining momentum due to a heightened recognition that integrated data sets can catalyze biomedical discoveries and drug development. Among the benefits are the fact that data sharing can help generate and investigate new research hypothesis beyond those explored in the original study. Despite several accomplishments establishing public systems and guidance for data sharing in clinical trials, this practice is not the norm. Among the reasons are ethical challenges, such as privacy of individuals, data ownership, and control. This paper creates awareness of the potential benefits and challenges of sharing individual clinical data, how to overcome these challenges, and how as a clinical pharmacology community we can shape future directions in this field.
AbstractList Efforts for sharing individual clinical data are gaining momentum due to a heightened recognition that integrated data sets can catalyze biomedical discoveries and drug development. Among the benefits are the fact that data sharing can help generate and investigate new research hypothesis beyond those explored in the original study. Despite several accomplishments establishing public systems and guidance for data sharing in clinical trials, this practice is not the norm. Among the reasons are ethical challenges, such as privacy of individuals, data ownership, and control. This paper creates awareness of the potential benefits and challenges of sharing individual clinical data, how to overcome these challenges, and how as a clinical pharmacology community we can shape future directions in this field.
Efforts for sharing individual clinical data are gaining momentum due to a heightened recognition that integrated data sets can catalyze biomedical discoveries and drug development. Among the benefits are the fact that data sharing can help generate and investigate new research hypothesis beyond those explored in the original study. Despite several accomplishments establishing public systems and guidance for data sharing in clinical trials, this practice is not the norm. Among the reasons are ethical challenges, such as privacy of individuals, data ownership, and control. This paper creates awareness of the potential benefits and challenges of sharing individual clinical data, how to overcome these challenges, and how as a clinical pharmacology community we can shape future directions in this field.
Author Bhattacharya, Sanchita
Burton, Jackson
Conrado, Daniela J.
Silva, Diego
Kim, Sarah
Shahin, Mohamed H.
Podichetty, Jagdeep
Romero, Klaus
AuthorAffiliation 2 Bakar Computational Health Sciences Institute University of California, San Francisco San Francisco California USA
4 Faculty of Health Sciences Simon Fraser University Vancouver British Columbia Canada
1 Pfizer Global Research Groton Connecticut USA
7 Critical Path Institute Tucson Arizona USA
5 Sydney Health Ethics Faculty of Medicine and Health University of Sydney Sydney Australia
3 Department of Pediatrics University of California, San Francisco San Francisco California USA
6 Center for Pharmacometrics and Systems Pharmacology Department of Pharmaceutics College of Pharmacy University of Florida Orlando Florida USA
8 e‐Quantify La Jolla California USA
AuthorAffiliation_xml – name: 3 Department of Pediatrics University of California, San Francisco San Francisco California USA
– name: 7 Critical Path Institute Tucson Arizona USA
– name: 1 Pfizer Global Research Groton Connecticut USA
– name: 6 Center for Pharmacometrics and Systems Pharmacology Department of Pharmaceutics College of Pharmacy University of Florida Orlando Florida USA
– name: 5 Sydney Health Ethics Faculty of Medicine and Health University of Sydney Sydney Australia
– name: 4 Faculty of Health Sciences Simon Fraser University Vancouver British Columbia Canada
– name: 2 Bakar Computational Health Sciences Institute University of California, San Francisco San Francisco California USA
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Snippet Efforts for sharing individual clinical data are gaining momentum due to a heightened recognition that integrated data sets can catalyze biomedical discoveries...
Efforts for sharing individual clinical data are gaining momentum due to a heightened recognition that integrated data sets can catalyze biomedical discoveries...
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SubjectTerms Alzheimer's disease
Biomarkers
Cancer
Clinical trials
Consortia
Drug development
Drug therapy
Information sharing
Initiatives
Lifestyles
Longitudinal studies
Medical research
Modernization
Oncology
Researchers
Review
Reviews
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Title Open Data Revolution in Clinical Research: Opportunities and Challenges
URI https://onlinelibrary.wiley.com/doi/abs/10.1111%2Fcts.12756
https://www.ncbi.nlm.nih.gov/pubmed/32004409
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