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A new Data Transparency deliverable is out for public review! The Rare The Rare Disease/Small Population Data Sharing project Sharing project has produced a new White paper ; - “Rare Disease Clinical Data Sharing” and are seeking your feedback. The purpose of this whitepaper 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 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 7th April to contribute your feedback!Find Out More: Advance Hub Rare Disease Project Page |
The SDTM ADaM Implementation FAQ project within the Optimizing the Use of Data Standards Working Group has published two new FAQs! They have answered a FAQ within Data Submission, the FAQ answered looks at the ‘Correct Implementation of the Define-XML Standard for Submission Purposes – ADaM and SDTM Variable Alignment’ and ‘Correct Implementation of the Define-XML Standard for Submission Purposes – Clarifications Needed’. You can view this question and see the FAQ's this project has answered so far here. Do you have a SDTM ADaM Implementation FAQ question? You can send your questions to the team by emailing workinggroups@phuse.global. |
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