Measuring physical activity in people with neuromuscular disorders

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to measure the level of physical activity in participants diagnosed with neuromuscular disorders. Participants will wear a small device on their leg for one week every six months over a three-year period, alongside undergoing physical exams, a six-minute walk test, vital sign assessments, and questionnaires. The study seeks to gather valuable data on physical activity patterns, which can help clinicians better understand disease progression and patient health. By utilizing consumer wearables, the study aims to bridge the gap in physical activity monitoring for individuals with rare diseases.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Patients with a clinically or genetically confirmed neuromuscular disorder
* Control subjects who do not have a neuromuscular disease.
* Participants at least 1 years of age.

Exclusion Criteria:

* Participant has a condition, which in the opinion of the Investigator may compromise safety
* Participant has a condition, which in the opinion of the Investigator may compromise or compliance

Where it's running

• Columbia University Irving Medical Center
  New York, New York, United States Recruiting

Study contacts

• Principal investigator: Michio Hirano, MD — Columbia University
• Study coordinator: Michio Hirano, MD
• Email: mh29@cumc.columbia.edu
• Phone: 1-212-305-1319

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Wearable monitoring of walking and arm movement in adults with neuromuscular or metabolic movement disorders

  This project uses a wrist/ankle wearable to continuously monitor walking and upper-limb movement in ambulant adults with neuromuscular diseases or obesity to see if digital measures like stride speed track real-life motor function.

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• Precision diagnosis and therapy for rare eye and neuromuscular diseases

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• Research network for hereditary spastic paraplegia and primary lateral sclerosis

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  Recruiting Boston Children's Hospital · Miami, Florida and 10 other locations · NCT06553976

• Study of limb movements in patients with neuromuscular diseases

  This study is testing new technology to see how well it can track and understand limb movements in people with neuromuscular diseases compared to those without any movement issues.

  Recruiting Centre Hospitalier Universitaire de Liege · Liège, Liege · NCT06439823

• Using MSOT to Diagnose and Monitor Neuromuscular Diseases in Children

  This study is testing a new type of scan to see if it can help doctors diagnose and track the progress of neuromuscular diseases in children without needing invasive procedures.

  Recruiting Children's Hospital of Eastern Ontario · Ottawa, Ontario · NCT06438965

• Evaluating a new breathing device for patients with neuromuscular diseases

  This study is testing a new breathing device that adjusts to patients' needs to see if it helps people with neuromuscular diseases breathe better than their current equipment.

  Recruiting at 2 sites Phase 2 Guy's and St Thomas' NHS Foundation Trust · London, London and 1 other locations · NCT06339580

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.