What this Trial Is About

Researchers are evaluating whether full video home polysomnography (a detailed sleep study) combined with nighttime transcutaneous CO2 monitoring can be effectively used to follow up on non-invasive ventilation (NIV) treatment in patients with Duchenne Muscular Dystrophy (DMD). The study aims to determine if these important measurements can be successfully conducted at home to guide treatment decisions. Additionally, the research will analyze the minimal necessary measurements required to make accurate treatment choices for these patients. Participants will undergo yearly home polysomnography and transcutaneous CO2 monitoring for a period of three years. This home-based monitoring approach mirrors the comprehensive in-hospital sleep studies typically used, allowing researchers to compare the feasibility and effectiveness of home versus hospital settings in managing NIV treatment in DMD patients. Throughout the study, participants will have their sleep and ventilation status assessed through these home tests. Researchers will track the ability to perform these measurements at home and evaluate if the collected data can lead to proper treatment decisions. The primary outcome is to assess the feasibility of full video home polysomnography and follow-up over the three-year period.

Follow-up of NIV At Home in Patients with Duchenne Muscular Dystrophy