Condition: Amyotrophic Lateral Sclerosis (ALS) · Chronic Respiratory Failure · Neuromuscular Disease Patients · Sponsor: University of Pennsylvania
Amyotrophic lateral sclerosis (ALS) is a disease that causes weakness of the muscles of the body. The disease can eventually lead to severe breathing problems, which is the most common cause of death from ALS. The treatment for breathing is non-invasive ventilation (NIV). It is a machine that helps a person breathe by pushing air in and out of their lungs through a mask worn over the face. Research has shown that NIV can improve the quality of life and survival of someone with ALS. Unfortunately, NIV is not equally beneficial for everyone. The investigators do not yet know the best time or method for starting NIV in ALS. Europe and Canada allow starting NIV much earlier in ALS than the United States. Current recommendations for starting NIV are based on the opinion of experts rather than large research studies. Medical insurance companies will not cover NIV until significant breathing weakness occurs. After NIV is started, there is no evidence-based guidance on the best way to adjust NIV to benefit patients as much as possible. Some patients have difficulty tolerating NIV, but it is not clear how to identify these individuals ahead of time. The investigators have created a new prediction tool that can identify patients at high risk of breathing problems within the next 6 months. This may help the study team identify who is more likely to benefit from starting NIV early. The investigators have published a paper that shows that NIV helps people with ALS live longer. This paper…
This description comes directly from the study's public registry record.
Jason T Ackrivo, MD, MSCE · 215-829-3053 · jason.ackrivo@pennmedicine.upenn.edu
Rebecca Lang Gallagher, MSEd · 215-662-4088 · Rebecca.Lang@pennmedicine.upenn.edu
Always discuss trial participation with your own doctor first.
| Penn State Hershey ALS Clinic | Hershey, Pennsylvania, United States | Recruiting |
| Penn Comprehensive ALS Center at Pennsylvania Hospital | Philadelphia, Pennsylvania, United States | Recruiting |
| Thomas Jefferson University Weinberg ALS Center | Philadelphi, Pennsylvania, United States | Recruiting |
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Source record: clinicaltrials.gov/study/NCT07071935