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Sharing is Caring: Unleash the Rare Disease Data Silos

Admirable advances in genetic medicine have recently stoked hopes that precision therapeutics may be on the way for patients living with rare diseases. But in reality, much of the data collected and generated is parked in proprietary databases.

It’s a practice that — driven by strong academic and economic incentives — eschews open access and thwarts the building of collective knowledge. Partitioning data also reduces the timely development of successful therapeutic products or interventions.

Sadly, when researchers and clinicians can’t or won’t share their data, it’s the patients who ultimately suffer.

We think this system needs to change. Don’t you? . . .

Published on Sanguine BioScience research blog on Sept. 7, 2021