Building Actionable Rare Disease Registries in the age of EHRs to Power Personalized Medicine: Lessons Learned in Standards, Data Models, Data Engineering, Patient Inclusion, and Regulatory Challenges - researchr publication

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Steven E. Labkoff, Leon Rozenblit, Alexander Elbert, Rimma Belenkaya. Building Actionable Rare Disease Registries in the age of EHRs to Power Personalized Medicine: Lessons Learned in Standards, Data Models, Data Engineering, Patient Inclusion, and Regulatory Challenges. In AMIA 2020, American Medical Informatics Association Annual Symposium, Virtual Event, USA, November 14-18, 2020. AMIA, 2020. [doi]

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