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SUMMARY:Diagnostic Research Workstream – Session 2: Data Sharing\, Data Management & Ethics
DESCRIPTION:This webinar gives an overview of the ERDERA Diagnostic Research Workstream’s data sharing framework\, covering the Data Sharing Framework Agreement\, ethical/governance requirements\, and the data submission process via GPAP/Phenostore and RD3. Intended for researchers\, clinicians\, data managers\, ERN and National Mirror Group members involved in or interested in ERDERA diagnostic research. \nRegister here. \n  \nAbout the ERDERA Diagnostic Research Workstream Webinar Series. \nThe series brings together ERN healthcare professionals\, clinicians\, geneticists\, researchers\, and other stakeholders to learn about the work\, progress\, and outcomes of the ERDERA Diagnostic Research Workstream (DRW). \nSessions will cover the full scope of the workstream — from governance and methodology to concrete analytical results — offering audiences a transparent and evolving view of how ERDERA is advancing diagnostics in rare diseases. \nDelivered as online webinars\, the series is accessible to both internal ERN audiences and external expert communities\, reflecting ERDERA’s commitment to open knowledge-sharing and collaboration across borders. \nFind out more here.
URL:https://erdera.org/event/diagnostic-research-workstream-session-2-data-sharing-data-management-ethics/
CATEGORIES:Clinical Research,Training and Education
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