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A new Data Transparency deliverable is out for public review! The Rare Disease/Small Population Data Sharing project has produced a new White paper Paper - “Rare Disease Clinical Data Sharing” and are seeking your feedback. The purpose of this White Paper is to review potential barriers to the sharing of rare disease data such as risk of re-identification and invasion of privacy (balanced against maintaining data utility) and understand if, and how, these barriers apply to controlled access data sharing under specific contextual assumptions. The development of strategies to enable rare disease data to be shared effectively and be reused is needed to advance research and clinical trial design where there is significant unmet need. Email workinggroups@phuse.global by Monday by 7April to contribute your feedback! |
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