Taking people in United StatesNo phase
Studies the diagnosis and treatment experience of people with spinal muscular atrophy
Interviews adults with spinal muscular atrophy about their path to diagnosis and treatment.
Plain-language title generated from the registry record
Registry title: Diagnostic Journey, Patient Experience, and Disparities in the Treatment of Spinal Muscular Atrophy (SMA) in the MedStar Health System
Key facts
- Where
- Washinton, United StatesSee the site
Where in United States
- MedStar Health Research InstituteWashinton, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Medstar Health Research Institute
- Trial code
- NCT07223489
- Record updated
- 16 January 2026
- Original description
Evaluate the diagnostic journey, patient experience, and disparities in the treatment of Spinal Muscular Atrophy (SMA) in the MedStar Health System.Read full original descriptionShow less
Understanding the Diagnostic Pathway and Treatment Experience of Patients With Spinal Muscular Atrophy (SMA)
Evaluate the diagnostic journey, patient experience, and disparities in the treatment of Spinal Muscular Atrophy (SMA) in the MedStar Health System.
Inclusion: SMA diagnosis, age greater than or equal to 18 years.
Exclusion: Deceased.