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.

Slide presentation title page for basic concepts of data sharing

“Basic Concepts of Data Sharing” (pdf)

Given by Joseph S. Ross, MD, MHS

Yale-New Haven Center for Outcomes Research and Evaluation

Slide presentation title page for UCL yale meeting

“University/Trial Collaborative Perspectives & Policies for Data Sharing” (pdf)

Given by Norman Williams, PhD

University College London

Slide presentation title page for aims and challenges of clinical trial data sharing
Slide presentation title page for academic perspectives on data sharing

“Academic Perspectives on Data Sharing” (pdf)

Given by Joseph S. Ross, MD, MHS

Yale-New Haven Center for Outcomes Research and Evaluation

Slide presentation title page for data release from publicly funded trials

“Data Release from Publicly Funded Trials” (pdf)

Given by Catrin Tudur Smith, MSc, PhD

University of Liverpool

Slide presentation title page for data shield and curation of ipd

“DataSHIELD and Curation of IPD” (pdf)

Given by Paul Burton, MD

University of Bristol

Slide presentation title page for data considerations for

“Challenges of Re-analyzing IPD” (pdf)

Given by Professor Lesley Stewart

University of York

Slide presentation title page for Publication and access to research datasets

“Publication and Access to Research Datasets” (pdf)

Given by Iain Hrynaszkiewicz

Nature Publishing Group

Slide presentation title page for What is clinicalstudydatarequest.com?

“What is ClinicalStudyDataRequest.com?” (pdf)

Given by Jennifer O’Callaghan

Wellcome Trust

Slide presentation title page Lessons Learned and how to ope. academic DS

“What is the YODA Project?” (pdf)

Given by Cary P. Gross, MD, and Joseph S. Ross, MD, MHS

Yale-New Haven Center for Outcomes Research and Evaluation

Slide presentation title page for Better Knowledge Better Society

“Opportunities to Promote Data Sharing Between UCL and the YODA Project” (pdf)

Given by Emma White, PhD

Administrative Data Research Centre England