Article

Linking international registries to FHIR and Phenopackets with RareLink: a scalable REDCap-based framework for rare disease data interoperability

2025-05-11

Abstract excerpt

<h4>Summary</h4> While Research Electronic Data Capture (REDCap) has been widely adopted in rare disease research, its unconstrained data format often leads to implementations that lack native interoperability with global health data standards, limiting secondary data use. To address this, we developed and validated RareLink , an open-source framework implementing our previously-published ontology-based rare disea...

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Literature Corpus work: 60bbd3c0-d99a-5627-918a-5f20adf3173f
DOI: 10.1101/2025.05.09.25327342

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