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Funding acknowledgement: This work was supported in part by the Centers for Disease Control and Prevention grant no. R01-TS000341.

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Welcome to the ALS-RWE Knowledge Hub.
This site brings together resources, methods, and publications to support the use of real-world evidence (RWE) in ALS research. Our goal is to promote transparency, reproducibility, and collaboration by providing a centralized space for:

  • Understanding how ALS data sets can be transformed into the OMOP Common Data Model.
  • Learning about methods such as the STARDUSTT approach for structuring analyses.
  • Accessing tools and resources developed by the OHDSI community.
  • Exploring selected publications and ongoing projects led by our collaborators.

This project is an initiative of the ALS Therapy Development Institute. We invite clinicians, researchers, and data scientists to use these materials as a foundation for further studies and to join the effort of advancing data-driven ALS research.
This guide was developed by: - Danielle Boyce, MPH, DPA, Director, Data Science and Biomedical Informatics; Principal Investigator, Real World Evidence - Gwen Huynh, PhD, Senior Scientist - Alan Premasiri, MS, Director of Clinical Operations - Fernando Vieira, MD, Chief Executive Officer/Chief Scientific Officer - Hannah Walters, MPH, DrPH, Scientist

ALS Therapy Development Institute
Contact: dboyce@als.net

Citation

Boyce, D., Vieira, F., Premasiri, A., Walters, H., & Huynh, N. (2025). ALS TDI Real World Evidence Resources. ALS Therapy Development Institute. https://doi.org/10.71944/5PP1-7X96