An observational study in Neuromuscular Diseases, sponsored by Columbia University. Recruiting at 1 site in United States. Open to participants aged 1 Year and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-01-23.
Sponsored by Columbia University · Observational
This study measures the level of physical activity in participants with neuromuscular disorders. The patient wears a small button like meter on their leg for a period of 1 week every 6 months over a period of 3 years. Participants will also have a physical exam, six minute walk test,vital signs and questionnaires.
Routine physical activity can be an important indicator of health across an individual's life span. Nonetheless, the frequency of inactivity continues to be problematic for a large number of children and adolescents. Adding to that challenge, fatigue has been described as a typical symptom of neurological diseases and disorders Consumer wearables and accelerometers are becoming increasingly popular to track physical activities and monitor health and disease progression. With the increased adoption of activity trackers comes the increased generation of valuable individual-based data. Generated data has the potential to provide detailed insights into the user's behavior and lifestyle. Although methods for objectively measuring physical activity in children and adults in naturalistic settings are well established (i.e., accelerometry), they are most widely used on healthy individuals. Due to cost and technical requirements, these technologies are limited which effects their wide-scale use. Ultimately, this undermines efforts to evaluate physical activity changes and nuances among healthy and diseased populations. This is of particular interest in rare disease populations, specifically in neuromuscular diseases, where one can study a wide range of features that can be used to monitor an individual's sleep, vertical positioning, or overall physical activity. Tracking physical activity can help provide clinicians with a more accurate disease profile and help to identify possible interventions. Collection of this data could potentially provide valuable insight into an individual's daily routines, lifestyle, and behaviors.
361 studies on the registry are indexed under Neuromuscular Diseases; 97 are open to participants now.
This study's planned enrollment of 40 is below the median of 72 across 144 observational studies indexed under Neuromuscular Diseases.
Browse Neuromuscular Diseases studies →Columbia University is the lead sponsor of 1,136 studies on the registry; 195 are open to participants now.
Of its 180 completed or terminated interventional studies of FDA-regulated products, 148 (82%) have results posted.
Counted across the registry records on this site, refreshed daily.
Patients with clinically or geneticallly confirmed neuromuscular disorder or controls who do not have, or are not expected to have neuromuscular disease.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Patients with confirmed neuromuscular disease
Other: ActivPal
Participants who do not have or are not expected to have neuromuscular disease
Other: ActivPal
Participants will wear the activity meter (a small button like device) on their thigh for a period of 7 days at the following time-points: baseline, 6, 12, 18, 24, 30 and 36 months. The meter will be placed on their thigh at a research visit and mailed back to the study team after 7 days.
Mean Activity Profile (measures time spent at various raw activity levels)
Activity level established with Activpal meter-button like device work on thigh.
Time frame: Up to 3 years
Mean intensity Count (measures time spent in various actions such as rest, walking etc.)
Fatigue level established with Activpal meter--button like device worn on thigh.
Time frame: Up to 3 years
6 minute walk test (6MWT)
Participant walks in hallway for 6 minutes as fast as possible (no running).
Time frame: Up to 3 years
Plan to share: No
No publications or documents are linked to this record.
Started Nov 2020 (actual). Primary completion is estimated for Aug 2026, 69 months after the start.
Of 64 non-industry observational studies under Neuromuscular Diseases, half reached primary completion within 38 months of starting (the median), counting those still running; a quarter within 12 and three quarters within 114. This study's planned 69 months is above that.
Counting every sponsor, half of 70 studies reached it within 37 months; a quarter within 12 and three quarters within 114.
How these figures are worked out, and which studies are left out of them.
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