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    • 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

    • 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


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