Developing a platform to study digital biomarkers in neurodegenerative diseases.
Official title: 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
Funded at Massachusetts General Hospital · NIH-10931549 · Data updated 2026-11-12
This study is working on a new way to help people with rare neurodegenerative diseases, like familial ALS, by using technology to track important health information and make it easier for patients to join clinical trials.
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 start | September 15, 2023 |
| Project end | August 31, 2027 |
| Funding year | 2024 |
| Award (this year) | $399,250 |
| NIH project number | 5U01FD008125-02 |
| Project ID | NIH-10931549 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include individuals diagnosed with familial ALS or ultra-rare motor neuron diseases.
✕Less likely to help
Patients with common forms of ALS or other neurodegenerative diseases that do not fall under the familial or ultra-rare categories may not benefit from this research.
What this research studies
This research aims to create a scalable platform that facilitates the observation and validation of digital biomarkers for neurodegenerative diseases, particularly focusing on familial ALS and ultra-rare motor neuron diseases. By utilizing decentralized observational methods, the project seeks to enhance the understanding of these diseases and improve patient recruitment for clinical trials. The approach involves identifying individuals with rare conditions and integrating them into the clinical research ecosystem, thereby addressing the challenges posed by traditional study models.
Why it matters
Potential benefit: If successful, this research could lead to improved identification and recruitment of patients for clinical trials, ultimately enhancing treatment options for those with neurodegenerative diseases.
How similar studies have gone: This approach is innovative and aims to address gaps in traditional research methods, although similar decentralized models have shown promise in other areas of clinical research.
Where this research is happening
-
Massachusetts General Hospital
Boston, United States Active
Researchers
- Principal investigator: Sherman, Alexander V — Massachusetts General Hospital
- Study coordinator: Sherman, Alexander V
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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.