Observing the Natural Course and Genetic Factors of Amyotrophic Lateral Sclerosis in Chinese Patients

What this Trial Is About

Amyotrophic lateral sclerosis ALS is a motor neuron disease that varies widely among patients and currently has no effective treatment. This registered cohort study aims to observe the natural progression of ALS in Chinese patients, identify factors linked to how the disease develops, and explore genetic mutations related to ALS, including searching for new disease-causing genes. The study is sponsored by the First Affiliated Hospital of Fujian Medical University. This observational study does not involve any treatment but focuses on collecting data from patients diagnosed with ALS and related conditions such as progressive muscular atrophy, primary lateral sclerosis, and progressive bulbar palsy. Researchers will monitor participants over time to gather information about the clinical course and genetic background of the disease. Participants will be followed to record key outcomes such as age at death and age at which life-support interventions like endotracheal intubation or tracheotomy are needed. The study includes ongoing observation and data collection to better understand disease progression and risk factors over a period of up to ten years from enrollment.

A Registered Cohort Study on Amyotrophic Lateral Sclerosis