Registry Forge: an open-source end-to-end pipeline for patient-directed SMART on FHIR registries
Boyce, D.; Premasiri, A.; Sullivan, S.; Levine, B.; Vieira, F. G.
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Objectives: Patient-directed SMART on FHIR lets registries acquire longitudinal electronic health record data, but the payload requires substantial engineering before use. We present Registry Forge, an open-source pipeline that converts it into research-ready outputs. Materials and Methods: Registry Forge decodes and parses mixed C-CDA, HTML, RTF, PDF, and FHIR inputs, joins records to a canonical patient identifier, and emits a browser-viewable dashboard, an OMOP CDM v5.4 data set, GA4GH Phenopackets v2, a code inventory, and regex extractions of disease-specific narrative content. Results: Applied to the ALS Research Collaborative Study (94 participants, 56 US health systems), it processed 22,686 source files and 1,791 FHIR Bundles (109,599 resources); only 15.0% of files were full C-CDA. Discussion: This pipeline generalizes to any registry acquiring data through patient-directed SMART on FHIR. Conclusion: Registry Forge closes the acquisition-to-analysis gap with no server infrastructure and is openly available.
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