Multi-site EMR data ingest through FHIR: A case study for the RDCRN

Project Summary This administrative supplement to the Data Management and Coordinating Center (DMCC) of the Rare Diseases Clinical Research Network (RDCRN) proposes to design, implement and test new software to enable the ingestion and quality control of multi-site Electronic Medical Records (EMR) data into natural

history study databases. The proposed technical solution is based on Fast Healthcare Interoperability Resources (FHIR) interfaces to EMR systems as well as the REDCap database infrastructure already operating in the RDCRN DMCC’s cloud environment. Over the one year performance period we will engage

with the CEGIR consortium and the EMR teams at Cincinnati Children’s and at least one additional site to demonstrate feasibility of our proposed approach, with the long-term goal of enabling EMR data flow into natural history research databases for all RDCRN consortia. Other potential long-term implications include

potentially significantly lower cost of data acquisition, increased standardization of data elements for RDCRN studies and increased availability of FAIR (findable, accessible, interoperable and reusable) data in the RDCRN’s long-term Data Repository. The work proposed here is a natural extension of the DMCC’s mission to provide data acquisition, storage

and analysis tools for rare disease researchers.