ALS risk factors in a long-term ALS study
Official title: RFA-TS-23-001: Assessment of ALS Risk Factors from ALS TDI's Ongoing Natural History Study (n = 784)
Funded at Als Therapy Development Foundation · NIH-11631679 · Data updated 2026-11-12
A long-term ALS study is looking at which factors may influence disease risk and progression in people living with ALS.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Als Therapy Development Foundation NIH-funded |
| Lab location | 1 site (Watertown, United States) |
| Project start | September 30, 2023 |
| Project end | September 29, 2027 |
| Funding year | 2025 |
| Award (this year) | $60,000 |
| NIH project number | 6R01TS000341-03M001 |
| Project ID | NIH-11631679 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults with ALS enrolled in the ALS TDI PMP cohorts and able to participate in long-term follow-up and data sharing.
✕Less likely to help
People not in the ALS TDI cohorts or unable to participate in ongoing data collection may not benefit.
What this research studies
This project uses data from two ALS cohorts totaling over 800 participants enrolled in a secure online portal that collects regular surveys, clinical information, and biological samples. Researchers will analyze natural history data, including lifestyle, geography, injuries, and military service, along with monthly functional, voice, and activity data, plus blood-based omics. The goal is to identify risk factors and understand how they relate to ALS features over time, with patient advocacy input guiding the approach. The study emphasizes privacy and data management, and includes a specialist in mapping to explore geographic patterns.
Why it matters
Potential benefit: If successful, findings could improve understanding of ALS risk factors and inform personalized care and prevention strategies for patients.
How similar studies have gone: Similar longitudinal ALS studies have provided insights into risk factors, though this project aims to expand with richer data and newer analyses.
Where this research is happening
-
Als Therapy Development Foundation
Watertown, United States Active
Researchers
- Principal investigator: Vieira, Fernando Gameiro — Als Therapy Development Foundation
- Study coordinator: Vieira, Fernando Gameiro
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.