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The need for privacy protection and appropriate clinical data sharing for GSSO information has been brought up in a number of our monthly meetings and in consultations.
A US taskgroup, SHIFT, is focusing on standards for clinical data sharing. They put out a white paper last fall discussing their upcoming work to develop standards and associated implementation guides.
I thought this group might like to take a look at what they're doing and recommending as we continue our discussions in this area.
Link to their website:
SHIFT website
Link to their paper:
SHIFT white paper