Muscular Dystrophy Association (MDA) U.S. Neuromuscular Disease Registry

Study ID
STU 052013-013

Cancer Related
No

Healthy Volunteers
No

Study Sites

Contact
Lauren Smith
214-456-0057
laurenc.smith@utsouthwestern.edu

Principal Investigator
Susan Iannaccone

Summary

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.

Participant Eligibility

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