Finding ALS risk factors using ALS TDI's natural history data
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-11307483 · Data updated 2026-11-12
This project looks for possible causes and factors that affect how ALS starts and progresses by analyzing detailed health, genetics, and lifestyle data from hundreds of people 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, 2026 |
| Funding year | 2025 |
| Award (this year) | $480,494 |
| NIH project number | 5R01TS000341-03 |
| Project ID | NIH-11307483 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates are people living with ALS who can enroll in ALS TDI’s Precision Medicine Program and are willing to complete regular online surveys, remote voice/activity recordings, and provide periodic blood samples.
✕Less likely to help
People without ALS or those unwilling or unable to provide repeated survey responses, remote monitoring data, or biological samples are unlikely to benefit directly from participating.
What this research studies
You would join a group of more than 800 people with ALS who regularly share health questionnaires and clinical measures through a secure web portal. Participants provide monthly self-reported function scores, voice recordings, activity data from wearable sensors, and periodic blood samples for genetics and other lab tests. Researchers from ALS TDI and Johns Hopkins will analyze these long-term data to confirm known risk links and to search for new geographic, environmental, military-service, injury, or biological factors tied to ALS. A person living with ALS is also advising on mapping and location-based analyses to better understand where and how exposures may matter.
Why it matters
Potential benefit: If successful, this work could identify factors that help predict who is at higher risk for ALS or influence disease course, which could guide earlier diagnosis, personalized care, or future prevention research.
How similar studies have gone: Previous natural history and genetic studies have identified some ALS-related genes and associations (for example with head injury or military service), but many potential risk factors remain unclear, so this work builds on established methods while searching for new signals.
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.