The MRCT Center, in collaboration with The Wellcome Trust, held a conference on “The Future of Clinical Trials Data Sharing” in London, U.K., March 21-22, 2016 with approximately 100 participants from academia, government, not-for-profit organizations, journal editors and industry.
The main theme of the conference was the presentation of plans for Vivli, a new entity for global data sharing that was developed by the Governance, Business Models, and Data Sharing Platform Workgroups which had been formed subsequent to last year’s data transparency conference.
Vivli is adapted from the Greek word for library, ‘vivliothiki’ and the Latin root ‘viv’ for life. The hope is that Vivli “the library of life” will evoke cooperation, collaboration and a determination to respect the altruism of clinical trial participants worldwide for the benefit of medicine and public health.
The mission of Vivli is to promote, coordinate, and facilitate clinical research data sharing through the creation and implementation of a sustainable global data-sharing enterprise that will:
- Protect study participants’ privacy and respect the legitimate interests of data generators, funders and sponsors
- Encompass the full breadth of clinical trials funded and conducted by academia, government, industry and others
- Respect and bridge to or incorporate existing data sharing platforms
- Provide the capability to host and analyze data, as well as to enable discovery of data on external or generator platforms.
- Interact with and complement current registries, results reporting platforms, and regulatory initiatives
- Provide an independent review process for data requests, where required
- Develop global, fair data sharing policies and practices
Experts in data sharing and conference participants responded to the plans for the new entity. Consensus recommendations for Vivli included:
- Strengthen the Vivli value proposition to ensure that the Vivli initiative will address a clear gap
- Accelerate the timeline to create Vivli and to launch a pilot program
- Respect existing platforms and take the existing efforts into account when developing the Vivli platform
Conference proceedings have been released and are available for MRCT sponsors.