Julia Fleck

ORCID: 0000-0003-2766-4547
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About
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Research Areas
  • Genomics and Rare Diseases
  • Biomedical Text Mining and Ontologies

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 standards, limiting secondary use. To address this, we developed and validated RareLink , an open-source framework implementing our previously-published ontology-based common model, enabling standardised exchange between REDCap, international registries, downstream analysis tools....

10.1101/2025.05.09.25327342 preprint EN cc-by-nc-nd medRxiv (Cold Spring Harbor Laboratory) 2025-05-11
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