CAPTURE-ALS: gathering clinic data to better understand ALS and related motor neuron conditions
Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
This project collects routine clinic information from people with ALS, PMA, and PLS to build a large, inclusive database for patients and researchers.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Miami School of Medicine NIH-funded |
| Lab location | 1 site (Coral Gables, United States) |
| Project ID | NIH-11171886 on NIH RePORTER |
What this research studies
You would contribute information captured during regular clinic visits using an electronic health record toolkit built into the Epic system, so no extra clinic tests are required. Data from around 1,700 patients and about 7,400 visits at eleven U.S. centers have already been combined, and the network is expanding to include more sites and people. The goal is to include patients often left out of traditional trials, like those with PLS and PMA, so the dataset reflects a wider range of real-world experiences. Over time this growing EHR-based cohort is meant to become a resource for understanding how symptoms progress and for making future trials more representative and efficient.
Who could benefit from this research
Good fit: People diagnosed with amyotrophic lateral sclerosis (ALS), primary lateral sclerosis (PLS), or progressive muscular atrophy (PMA) who receive care at participating centers are ideal candidates to be included.
Not a fit: People without ALS/PLS/PMA or those who do not receive care at participating centers are unlikely to be included or to directly benefit from participation.
Why it matters
Potential benefit: If successful, this effort could help speed development of better treatments by giving researchers more complete and diverse information about how ALS and related conditions progress.
How similar studies have performed: Traditional natural history and registry studies have provided valuable guidance for trials, and using an EHR toolkit to capture routine clinical data is a newer approach designed to include more patients and reduce burden.
Where this research is happening
Coral Gables, United States
- University of Miami School of Medicine — Coral Gables, United States (Active)
Researchers
- Principal investigator: Benatar, Michael — University of Miami School of Medicine
- Study coordinator: Benatar, Michael
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.