Decentralized digital biomarker platform for familial ALS and ultra-rare motor neuron diseases
Creating a disease-agnostic scalable platform for decentralized observational and validation of digital biomarkers studies and piloting it for people with familial ALS and ultra-rare MNDs
This project builds a remote system that collects wearable and smartphone health data to help track disease changes in people with familial ALS and other ultra-rare motor neuron diseases.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Massachusetts General Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project ID | NIH-11174397 on NIH RePORTER |
What this research studies
If you join, you would use apps, wearables, or other devices at home so researchers can capture regular digital health measurements without travel. The team is creating a single, scalable platform that can run many observational and validation projects the same way across different diseases. They will pilot the platform specifically with people who have familial ALS and other ultra-rare motor neuron diseases to improve matching, monitoring, and enrollment into future trials. The goal is to make participation easier for people who do not live near specialty clinics and to standardize measurements so results can be compared and reused.
Who could benefit from this research
Good fit: Ideal candidates are people living with familial ALS or other ultra-rare motor neuron diseases who can use a smartphone or wearable and want to join a remote natural history and validation effort.
Not a fit: People without ALS or motor neuron disease, or those unable to use digital devices or participate remotely, are unlikely to benefit from this specific project.
Why it matters
Potential benefit: If successful, this could make it easier to follow your disease remotely, speed identification of eligible people for trials, and support new endpoints that better reflect daily life.
How similar studies have performed: Other digital biomarker projects in neurology have shown promise for tracking disease, but this disease-agnostic, decentralized platform and its focused pilot in familial ALS and ultra-rare MNDs is a relatively new and expanding approach.
Where this research is happening
Boston, United States
- Massachusetts General Hospital — Boston, United States (Active)
Researchers
- Principal investigator: Sherman, Alexander V — Massachusetts General Hospital
- Study coordinator: Sherman, Alexander V
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 below.