JAMIA open · 2026
Registry Forge: an open-source end-to-end pipeline for patient-directed SMART on FHIR registries.
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Boyce Danielle, Premasiri Alan, Sullivan Shawn, Levine Beth, Vieira Fernando G
Аннотация
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 curation-ready outputs.
MATERIALS AND METHODS: Registry Forge parses C-CDA, HTML, RTF, PDF, and FHIR inputs, joins records to a canonical identifier, and emits a browser dashboard, an OMOP CDM v5.4 data set, GA4GH Phenopackets v2, a code inventory, and disease-specific narrative extractions.
RESULTS: Applied to the ALS Research Collaborative Study (94 participants, 56 US health systems), it processed 22 686 files and 1791 FHIR Bundles (109 599 resources); only 15.0% of files were full C-CDA XML; HTML (48.4%) and RTF (34.3%) predominated.
DISCUSSION: Payloads are far more heterogeneous than often assumed; the architecture is designed for extension, though generalizability remains to be demonstrated.
CONCLUSION: Registry Forge closes the gap between acquisition and curation-ready data with no server infrastructure and is openly available.
MATERIALS AND METHODS: Registry Forge parses C-CDA, HTML, RTF, PDF, and FHIR inputs, joins records to a canonical identifier, and emits a browser dashboard, an OMOP CDM v5.4 data set, GA4GH Phenopackets v2, a code inventory, and disease-specific narrative extractions.
RESULTS: Applied to the ALS Research Collaborative Study (94 participants, 56 US health systems), it processed 22 686 files and 1791 FHIR Bundles (109 599 resources); only 15.0% of files were full C-CDA XML; HTML (48.4%) and RTF (34.3%) predominated.
DISCUSSION: Payloads are far more heterogeneous than often assumed; the architecture is designed for extension, though generalizability remains to be demonstrated.
CONCLUSION: Registry Forge closes the gap between acquisition and curation-ready data with no server infrastructure and is openly available.