Resources¶
This page collects related tools, training materials, and reference content that adopters of Registry Forge may find useful. These come from the same author and team working on patient-directed registry data engineering for ALS and the broader rare disease and real world evidence community.
Related tools¶
CDAtransformer¶
BoyceLab/CDAtransformer — an earlier tool by the same author that parses an individual C-CDA file and surfaces its structured content (problems, medications, observations, labs, encounters, narratives) for direct inspection.
When to reach for CDAtransformer vs. Registry Forge. The two tools solve different problems and complement each other:
| Use case | Use CDAtransformer | Use Registry Forge |
|---|---|---|
| "I have one C-CDA file and want to see what's in it" | ✓ | |
| Exploring an unfamiliar EHR vendor's C-CDA flavor before scaling up | ✓ | |
| Sanity-checking a single record against the chart | ✓ | |
| Teaching / learning what C-CDA structure looks like | ✓ | |
| "I have thousands of files across C-CDA + FHIR + RTF + PDF and want a research-ready data set" | ✓ | |
| Producing a versioned OMOP CDM v5.4 ETL output | ✓ | |
| Producing GA4GH Phenopackets for matchmaker submission | ✓ | |
| Cohort EDA, device extraction, drug repurposing add-ons | ✓ | |
| Quality control framework, vocabulary-versioned outputs | ✓ |
A common workflow combines them: use CDAtransformer during onboarding of a new EHR vendor to understand the shape of the C-CDA files you're getting (one document at a time), then switch to Registry Forge for production processing of the full corpus once you understand the vendor's quirks.
Reference works and training¶
ALS TDI Real World Evidence Resources¶
ALS TDI Real World Evidence Resources — the umbrella site curated by ALS TDI for real world evidence methodology, examples, and training relevant to ALS research. Includes worked examples, methodology notes, and pointers to the broader RWE community. The natural landing site for anyone starting RWE work in ALS or related neurodegenerative disease.
Book: Guide to Real-World Data for Clinical Research¶
By Danielle Boyce (ALS TDI) and Pavel Goriacko (Montefiore). A practical, accessible introduction to using real world data for clinical research — covering data sources, study design, methodological pitfalls, and worked examples. Recommended for clinicians, registry staff, and trainees who are new to real world evidence and want a single-volume orientation before going deeper into OMOP or Sentinel-style tooling.
Online course: Introduction to OMOP — Your Frequently Asked Questions Answered¶
Taught by Danielle Boyce (ALS TDI) and Pavel Goriacko (Montefiore) through the Tufts Clinical and Translational Science Institute. A structured introduction to the OMOP Common Data Model that answers the questions adopters most commonly have when they first encounter OHDSI tooling — what OMOP is, what it is not, when to use it, how vocabulary mapping works, what ATLAS does, and how to read a CDM table. A natural companion to the Registry Forge OMOP ETL add-on module.
Where this fits¶
Registry Forge focuses on the engineering side of registry data: parsing, normalizing, harmonizing, and ETL'ing raw EHR exports into research-usable structured outputs. The resources on this page focus on the methodology side: what real world data is good for, how to design a study using it, what OMOP buys you, and how to think about data quality. Adopters working on both ends benefit from reading them together — the pipeline gives you the bones, the methodology guides give you the judgment about what to do with them.
For the technical canonical references on the standards Registry Forge consumes and produces (OMOP CDM v5.4 spec, GA4GH Phenopackets schema, HPO, Mondo, etc.), see the External references and standards page.