Tracking health data for people with motor nerve diseases

This is a long-term registry — essentially a medical database — that collects health information from people with ALS, spinal muscular atrophy, and related motor nerve diseases. Researchers gather data from your medical records, any surveys you complete, and information about your care (like medications, respiratory support, and assistive devices) over time. The goal is to understand how these diseases progress and what types of care help patients most.

These motor nerve diseases are rare and serious, and doctors still have much to learn about how they unfold in individual patients and what combination of treatments and supports work best. By collecting real-world health information from many patients over time, researchers can spot patterns, improve care, and potentially identify targets for new treatments.