Muscular Dystrophy Association (MDA) U.S. Neuromuscular Disease Registry
This study involves the collection of data during regular patient visits, which are entered into a secure web-based portal. information collected includes demographics (i.e. age, race/ethnicity, state of residence, level of education, etc.), health status (i.e. height, weight, pulmonary and cardiac function, nutritional status, genetic mutation, specific neuromuscular disease-related complications, etc.), and treatments (i.e. medications, surgeries, other therapies). Data will be managed through the web-based registry platform, where annual reports are created and neuromuscular population trends are analyzed.
1. Patients regularly seen in the MDA Neuromuscular Clinic at Children's Medical Center Dallas
2. Patients who have previously been diagnosed with one of three progressive neuromuscular diseases (Spinal Muscular Atrophy (SMA), Amyotrophic Lateral Sclerosis (ALS), and Duchenne Muscular Dystrophy (DMD))
3. Patients who consent to participate in the Registry