Linking international registries to FHIR and Phenopackets with RareLink: a scalable REDCap-based framework for rare disease data interoperability
Adam S L Graefe, Filip Rehburg, Samer Alkarkoukly, Daniel Daniš, Ana Grönke, Miriam R. Hübner, Alexander Bartschke, Thomas Debertshäuser, Sophie Anne Inès Klopfenstein, Julian Saß, Julia Fleck, Mirko Rehberg, Jana Zschüntzsch, Elisabeth F. Nyoungui, Tatiana Kalashnikova, , Oya Beyan
RareLink enables interoperability between REDCap and global health standards by exporting data to Phenopackets and FHIR, improving rare disease research scalability and data reuse.
medRxiv · May 9, 2025 · PreprintGenetic & Genomic Medicine