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Decades in the Making

With increased interest in data sharing, including sharing clinical trial data, Ida Sim from the University of California, San Francisco, School of Medicine, thought the time might be ripe to implement an idea she had nearly 20 years ago, ScienceInsider reports.

In 1997, Sim, then at Stanford University, proposed the creation of a GenBank-like database of clinical trial data, ScienceInsider says. While clinical trial registries like were developed, they include only broad descriptions of the studies, not the data produced.

And now, ScienceInsider reports, Brigham and Women's Hospital and Harvard University researchers, along with Sim, are trying to develop such a clinical trial data-sharing database, which they've dubbed Vivli, with funding for its working group from GlaxoSmithKline. In the New England Journal of Medicine this month, the researchers describe Vivli as a global, neutral network that will link existing data-sharing platforms and communities as well as host data itself.

"Vivli will aim for flexibility in the types of data captured and will eventually develop the capacity to host non-clinical trial data, including public health, epidemiologic, and surveillance data, and genomic and other 'omic' data," Sim and her colleagues add in their NEJM article.

ScienceInsider notes that critics like Johns Hopkins University's Kay Dickersin, wonder whether the platform would be aimed at industry users and those who already have data-sharing platforms. "We need some sort of coordinating vision, but the question that I would have is — is this a coordinating vision?" Dickersin tells ScienceInsider.