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The Good Transparency Practicesproject have has published a new White Paper. Good Transparency Practice (GTP) is a guideline developed by the PHUSE Data Transparency Working Group to create a set of best practices to govern the anonymisation of clinical trial data, for external sharing or disclosure. Although there are transparency initiatives across the globe, with differing guidelines, the common goal is to uphold patient privacy and data utility to the highest standards.

The Rare Disease/Small Population Data Sharing project within the Data Transparency Working Group have has published a new White Paper. The purpose of this white paper 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) to understand if and how these barriers apply to controlled access data sharing under specific contextual assumptions.