Monitoring non-invasive ventilation at home for patients with Duchenne muscular dystrophy
Official title: Follow-up of NIV At Home in Patients with Duchenne Muscular Dystrophy
Run by Universitaire Ziekenhuizen KU Leuven · NCT06773988 · Data updated 2026-11-12
This study is testing whether using video and CO2 monitoring at home can help track how well non-invasive ventilation works for people with Duchenne muscular dystrophy.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | Men only |
| Enrollment | 17 (estimated) |
| Sponsor | Universitaire Ziekenhuizen KU Leuven Academic / other |
| Locations | 1 site (Leuven, Vlaams-Brabant) |
| Status | Recruiting |
| Started | December 6, 2024 |
| Main results expected | October 31, 2027 |
| Study ends | December 31, 2027 |
| Registry record updated | January 14, 2025 |
| Trial ID | NCT06773988 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are adults over 18 years old with Duchenne muscular dystrophy who are currently using non-invasive ventilation.
✕Probably not a fit
Patients who are under 18 years old or not using non-invasive ventilation may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This study aims to assess the feasibility of using full video home polysomnography combined with nocturnal transcutaneous CO2 monitoring to follow up on non-invasive ventilation (NIV) in patients with Duchenne muscular dystrophy (DMD). Researchers will evaluate whether adequate measurements can be obtained in a home setting to inform treatment decisions. Additionally, the study will analyze the minimal measurement requirements necessary for effective treatment planning for these patients.
Why it matters
Potential benefit: If successful, this study could enhance the management of respiratory care in patients with Duchenne muscular dystrophy, leading to improved patient outcomes.
How similar studies have gone: While this approach is innovative, similar studies have not been widely reported, indicating that this may be a novel investigation.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with DMD \> 18 years using NIV * Signing the written informed consent Exclusion Criteria: * /
Where it's running
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Universitaire Ziekenhuizen KU Leuven
Leuven, Vlaams-Brabant, Belgium Recruiting
Study contacts
- Study coordinator: Dries Testelmans, MD PHD
- Email: dries.testelmans@uzleuven.be
- Phone: +3216342522
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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How chronic pain changes over time in kids with Duchenne Muscular Dystrophy
This study is following children and teens with Duchenne Muscular Dystrophy for 6 months to see how their chronic pain changes and how it affects daily life.
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Bone health in adults with Duchenne muscular dystrophy: osteoporosis, fractures, and treatment
This study looks at how common bone problems and fractures are in adults with Duchenne muscular dystrophy and what factors from childhood might affect bone health later on.
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Respiratory progression in adults with Duchenne muscular dystrophy: a long-term observational study
This study tests how respiratory function changes over three years in adults with genetically confirmed Duchenne muscular dystrophy.
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Modeling heart failure in Duchenne and Becker muscular dystrophy to find surrogate heart measures
This study will look at heart disease in people with Duchenne/Becker muscular dystrophy and carriers to see if MRI-based heart measures can predict death or major heart problems.
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Duchenne/Becker Muscular Dystrophy EHR Data Linkage
This study tests whether consented patients’ electronic health records can be linked with the Duchenne Registry data to create a richer view of Duchenne and Becker muscular dystrophy care.
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Zeleciment Rostudirsen (DYNE-251) for Duchenne Muscular Dystrophy in Ambulatory Boys
This trial tests whether intravenous Zeleciment Rostudirsen (DYNE-251) given every 4 weeks is safe and helps improve function in ambulatory boys with Duchenne muscular dystrophy who have a specific dystrophin gene mutation.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.