Registry Forge: an open-source end-to-end pipeline for patient-directed SMART on FHIR registries.

Authors

Danielle Boyce, Alan Premasiri, Shawn Sullivan, Beth Levine, Fernando G Vieira

Published in

JAMIA open. Volume 9. Issue 5. Pages ooag200. Epub Oct 16, 2026.

Abstract

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.
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.
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.
Payloads are far more heterogeneous than often assumed; the architecture is designed for extension, though generalizability remains to be demonstrated.
Registry Forge closes the gap between acquisition and curation-ready data with no server infrastructure and is openly available.

PMID:
42891488
Bibliographic data and abstract were imported from PubMed on 18 Oct 2026.

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