1390-RareLink: for Rare Disease Data Interoperability
Researchers have developed RareLink, an open-source framework designed to solve data sharing challenges in the field of rare disease research. By integrating a standardized common data model into the widely used REDCap platform, the system allows scientists to collect complex patient information with high semantic precision. RareLink facilitates the seamless export of clinical data into international formats such as HL7 FHIR and GA4GH Phenopackets, making datasets instantly usable for global analysis and registry linkage. The framework was iteratively refined through international…
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