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University College London and YODA Project Joint Meeting on Facilitating Data Access to Non-Industry Funded Research

University College London (UCL) and the Yale University Open Data Access (YODA) Project brought together clinical researchers, research funders, patient advocates, and other stakeholders to discuss the challenges of sharing clinical trial data from non-industry funded research. The first half of the day included a series of presentations reviewing current policies and principles for data sharing from both industry and non-industry funded studies. These served as a prelude to a broader discussion on the need to enhance data sharing efforts among academically-based investigators and a possible collaboration between UCL and the YODA Project. Several clinical trials were identified as potential “test-cases” for sharing of non-industry funded research. Meeting participants are working to identify next steps for implementing a pilot project for sharing data from non-industry funded studies.

Click on the following to view presentations given throughout the day.

“Basic Concepts of Data Sharing”
Given by Joseph S. Ross, MD, MHS
Yale-New Haven Center for Outcomes Research and Evaluation
“University/Trial Collaborative Perspectives & Policies for Data Sharing”
Given by Norman Williams, PhD
University College London
“Aims and Challenges of Clinical Trial Data Sharing”
Given by Trish Groves, MD
The BMJ
“Academic Perspectives on Data Sharing”
Given by Joseph S. Ross, MD, MHS
Yale-New Haven Center for Outcomes Research and Evaluation
“Data Release from Publicly Funded Trials”
Given by Catrin Tudur Smith, MSc, PhD
University of Liverpool
“DataSHIELD and Curation of IPD”
Given by Paul Burton, MD
University of Bristol
“Challenges of Re-analyzing IPD”
Given by Professor Lesley Stewart
University of York
“Publication and Access to Research Datasets”
Given by Iain Hrynaszkiewicz
Nature Publishing Group
“What is ClinicalStudyDataRequest.com?”
Given by Jennifer O’Callaghan
Wellcome Trust
“What is the YODA Project?”
Given by Cary P. Gross, MD, and Joseph S. Ross, MD, MHS
Yale-New Haven Center for Outcomes Research and Evaluation
“Opportunities to Promote Data Sharing Between UCL and the YODA Project”
Given by Emma White, PhD
Administrative Data Research Centre England

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