Publication¶
Registry Forge: an open-source end-to-end pipeline for patient-directed SMART on FHIR registries¶
Danielle Boyce, MPH, DPA1,2; Alan Premasiri1; Shawn Sullivan1; Beth Levine1; Fernando G. Vieira, MD1
1 ALS Therapy Development Institute, 480 Arsenal Street, Suite 201, Watertown, MA 02472, USA 2 Johns Hopkins University, Biomedical Informatics and Data Science Section, Baltimore, MD 21205, USA
Corresponding author: Danielle Boyce, dboyce@als.net
The preprint is posted on medRxiv. The full text, abstract, lay summary, figures, funding statement, and author declarations are all available there.
Read the preprint on medRxiv Source repository
Preprint, not peer reviewed
This is a preprint. It is a preliminary report that has not been certified by peer review. It should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Cite this preprint
Boyce D, Premasiri A, Sullivan S, Levine B, Vieira FG. Registry Forge: an open-source end-to-end pipeline for patient-directed SMART on FHIR registries. medRxiv 2026.06.02.26354637. doi:10.64898/2026.06.02.26354637
| Article type | Application Note |
| Preprint server | medRxiv |
| Preprint DOI | 10.64898/2026.06.02.26354637 |
| Posted | 3 June 2026 |
| Software / release archive DOI | 10.71944/2P5C-NG50 |
| License | MIT (software); CC BY 4.0 (preprint text) |
| Keywords | Patient Registries; SMART on FHIR; HL7; Electronic Health Records; Amyotrophic Lateral Sclerosis |
Try it¶
A fully synthetic, single-patient interactive demonstration of the dashboard is hosted alongside the source code so that other registries can evaluate the pipeline before adopting it. See the live demos and the architecture pages.