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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 Danis, Ana Grönke, Miriam R Hübner,Alexander Bartschke, Thomas Debertshäuser, Sophie A I Klopfenstein,Julian Saß, Julia Fleck, Mirko Rehberg, Jana Zschüntzsch, Elisabeth F Nyoungui,Tatiana Kalashnikova,Luis Murguía-Favela,Beata Derfalvi, Nicola A M Wright,Shahida Moosa,Soichi Ogishima, Oliver Semler, Susanna Wiegand, Peter Kühnen, Christopher J Mungall,Melissa A Haendel, Peter N Robinson,Sylvia Thun,Oya Beyan

medRxiv the preprint server for health sciences(2025)

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