Challenges and a Way Forward in Sharing Clinical Trial Data: A Workshop on November 18-19, 2019

Vivli Executive Director, Rebecca Li, will speak about the Vivli platform on the first day and Vivli founder and technical lead, Ida Sim, will moderate a session on the second day about Overcoming Usability and Sustainability Challenges.

The workshop will explore challenges, and opportunities in clinical trial data sharing efforts since the release of the 2015 Institute of Medicine report Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk.

WORKSHOP SPEAKERS WILL:

• Consider the value and the potential risks/costs of sharing clinical trial data for key stakeholders, including clinical trialists, sponsors, primary and secondary researchers, and patients;
• Review the current landscape of clinical trial data sharing and reuse across public and private sectors (e.g., policies, platforms, collaborations, data sharing culture, published research output);
• Examine use cases and trends from across public and private sectors when it comes to success, failure, lessons learned, and value;
• Consider the perspectives and expectations of primary and secondary researchers, clinical trial participants, patient organizations, research sponsors (pharmaceutical companies and nonprofit organizations), journals, institutions, and federal agencies; and
• Discuss next step opportunities for stakeholders to better harmonize incentives, policy, data standards, and governance to encourage the sharing and reuse of clinical trial data.

This workshop is co-sponsored by the Wellcome Trust and convened under the auspices of the National Academies Forum on Drug Discovery, Development, and Translation; the Forum on Neuroscience and Nervous System Disorders; the National Cancer Policy Forum; and the Roundtable on Genomics and Precision Health.