Sharing Clinical Trial Data: Challenges and a Way Forward

Workshop

Sharing Clinical Trial Data: Challenges and a Way Forward – A Workshop

November 18 - 19, 2019

Past

Materials

About

This public workshop provided a venue for stakeholders to discuss advances, challenges, and opportunities in clinical trial data sharing efforts since release of the 2015 Institute of Medicine report, Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk.

The workshop was co-hosted by 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; and co-sponsored by Wellcome.

The workshop featured invited presentations and discussions to:

Consider the value and the potential risks and 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

Below are meeting materials from the workshop, including an agenda, a workshop briefing book, and workshop presentations.

For additional information on the workshop, including the planning committee and sponsors, please visit our project page.

Related activities include:

Strategies for Responsible Sharing of Clinical Trial Data
Sharing Clinical Research Data: A Workshop (2012)
Sharing Clinical Research Data: An Action Collaborative

Contact

Forum Staff

drugforum@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

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Sharing Clinical Trial Data: Challenges and a Way Forward – A Workshop

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Sharing Clinical Trial Data: Challenges and a Way Forward – A Workshop