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‎docs/als-tdi-omop-data-set.md‎

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# Release Notes: Version 0.1.0
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The first release of the ALS TDI ARC Study, mapped to the Observational Medical Outcomes Partnership Common Data Model (OMOP CDM), restructures a subset of the ARC Natural History Study into the OMOP CDM structure and maps a subset to standardized vocabularies.
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> Note about EHR data: We are actively working to include electronic health record (EHR) data in future releases.
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### Complete Data Set and Documentation
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Neuromine Data Portal
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### CDM Version
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- OMOP CDM v5.4
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### Participant Summary
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- Total participants: 1,665
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- People with ALS, Asymptomatic carriers, Healthy controls
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### Domain Mappings
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Includes Person, Observation (including ALSFRS-R), Measurement (lab results), Drug Exposure, Mortality, etc.
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### Dates and Timing
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Dates may be shifted for de-identification.
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## Missing Data
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Not all participants have complete data.
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## Custom Concepts
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Some ALS-specific variables lacked standardized OMOP vocabularies; custom/local concepts were created.
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## CDM Summary Counts
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(See original for detailed table.)

‎docs/authors.md‎

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# Authors
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This guide was developed by:
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- Danielle Boyce, MPH, DPA, Principal Investigator, Real World Evidence
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- Hannah Walters, MPH, DrPH, Postdoctoral Researcher, Real World Evidence
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- Alan Premasiri, MS, Director of Clinical Operations
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- Fernando Vieira, MD, Chief Executive Officer/Chief Scientific Officer
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ALS Therapy Development Institute

‎docs/free-rwe-resources.md‎

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# New to RWE? Start Here
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These curated, freely accessible resources provide foundational knowledge, practical examples, and step-by-step instructions for navigating real world evidence.
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### Book
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Guide to Real-World Data for Clinical Research — by Danielle Boyce (ALS TDI) and Pavel Goriacko (Montefiore).
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### Online Course
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Introduction to OMOP: Your Frequently Asked Questions Answered — taught by Danielle Boyce and Pavel Goriacko.
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### Curated Resource Overview
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OHDSI, OMOP, and FHIR for Neurodegenerative Disease Researchers — Created by Danielle Boyce (ALS TDI).
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### ALS Geospatial Hub
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The ALS Geospatial Hub brings together authoritative data organized by geography.
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## Additional Resources to Support the STARDUSTT framework
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- Git and GitHub
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- Relational Databases
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- See the OMOP and OHDSI Resources chapter for more.

‎docs/index.md‎

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# Home
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## Table of Contents
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- [New to RWE? Start Here](free-rwe-resources.md)
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- [ALS TDI OMOP Data Set](als-tdi-omop-data-set.md)
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- [STARDUSTT Approach](stardustt-approach.md)
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- [OMOP/OHDSI Resources](omop-ohdsi-resources.md)
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- [Select Publications](select-publications.md)
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- [Authors](authors.md)

‎docs/omop-ohdsi-resources.md‎

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# OMOP/OHDSI Resources
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This chapter contains practical resources for working with OHDSI and OMOP, including an interactive OMOP data dictionary, code snippets for common analytic tasks, and examples of observational research projects suited to OMOP/OHDSI frameworks.
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## OMOP CDM Basic Data Dictionary
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(Click-through resource in the original.)
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## Projects Best Suited for Observational Research and OHDSI Network Studies
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- Analytic use cases and examples (Clinical Characterization, Treatment Utilization, Outcome Incidence, etc.)
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## Commonly Used CDM Tables Overview
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Person, Visit Occurrence, Condition Occurrence, Drug Exposure, Measurement, Procedure Occurrence, Observation, Device Exposure, Death.
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## OMOP Data Quality
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Pointers to The Book of OHDSI and Kahn et al. (2016).
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## ETL Basics and Steps
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High-level steps from profiling and mapping to testing and deployment.
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## OHDSI Analysis Tools, Data Science Handbook, Data Management Tools & Resources, Programming Resources
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Multiple references listed in the original.
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## Special Topic: Clinical Registries Using OHDSI
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Includes slides link.
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## OMOP Code Snippets
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Repository link in the original.

‎docs/select-publications.md‎

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# Select Publications
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An assortment of scientific articles authored or co-authored by team members, covering RWE in ALS and other disease areas.
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## 2025
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- Nature Medicine biomarker consortium (citation in original).
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- IJERPH: LASSO regression paper.
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- Pediatric Research: LLMs and clinical calculations.
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## 2024
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- Wearables and ALS progression (JNER).
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- ILAE Big Data Commission (Epilepsia Open).
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- CDC ALS registry qualitative risk factor analysis (ALS & FTD).
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## 2023
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- Wearables and ML preprint (medRxiv).
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## 2022
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- npj Digital Medicine ALS severity measure.

‎docs/stardustt-approach.md‎

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# The STARDUSTT Framework -- Addressing the Curse of Knowledge in OMOP Implementation
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## Presentation
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## White Paper
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### Executive Summary
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### Background
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### The STARDUSTT Framework
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#### STARDUSTT Components
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### Implementation Insights
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### Common Problems and Strategies
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### Applying STARDUSTT to Personas
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#### Personas in Practice
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### Conclusion
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### Acknowledgements
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### References

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