Tracking walking with digital tools in two childhood muscle diseases
Studies walking measured by digital tools in children with Duchenne or spinal muscular atrophy.
Plain-language title generated from the registry record
Registry title: Establishing Walking-related Digital Biomarkers in Rare Childhood Onset Progressive Neuromuscular Disorders
Key facts
- Where
- Boston, New York, and Palo Alto, United StatesSee the 3 sites
Where in United States
- Boston Children's HospitalBoston, United StatesTaking people
- Columbia University Irving Medical CenterNew York, United StatesTaking people
- Stanford UniversityPalo Alto, 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
- Columbia University
- Trial code
- NCT06839469
- Record updated
- 9 April 2026
- Original description
The purpose of this research is (1) to identify disease specific walking-related digital biomarkers of disease severity, and (2) monitor longitudinal changes in natural environments, for extended periods of time, in DMD and SMA.Read full original descriptionShow less
Establishing Walking-related Digital Biomarkers in Rare Childhood Onset Progressive Neuromuscular Disorders
The purpose of this research is (1) to identify disease specific walking-related digital biomarkers of disease severity, and (2) monitor longitudinal changes in natural environments, for extended periods of time, in DMD and SMA.
Inclusion: Genetic confirmation of disease (DMD, SMA) or healthy control; Able to walk independently at least 25 meters; Ongoing corticosteroids therapy or initiation of corticosteroid therapy in the previous 3 months for DMD; Stable dose of FDA approved SMN up-regulator therapy or in an open-label extension phase of a study treatment for at least 6 months for SMA or gene replacement at enrollment for SMA or DMD participants.
Exclusion: Use investigational medications intended for treatment of NMD within 30 days; Prior to study entry had an injury or surgery that would impact gait within the previous 3 months; Use foot orthoses or assistive devices for community ambulation or a mobility device for community navigation.