Long-Term Observational Study to Understand and Track ALS and Related Disorders Including ALS-FTD, PLS, and PMA with Healthy Comparison Participants

What this Trial Is About

Researchers are conducting a long-term observational study called CAPTURE ALS to collect detailed information about Amyotrophic Lateral Sclerosis ALS and related neurodegenerative disorders. This platform aims to gather and store a wide range of data and biological samples to support future ALS research worldwide. The study includes participants with ALS, related disorders, and healthy controls for comparison to better understand disease progression over time. Participants with ALS or related conditions will attend up to five in-person visits over one year at screening, and at 0, 4, 8, and 12 months. Healthy control participants will have three visits at screening, 0, and 8 months. At each visit after screening, all participants will undergo MRI scans, cognitive and speech assessments, and complete health questionnaires. Those with ALS will also have clinical evaluations specific to their condition, including neurological exams and lung function tests. Biospecimens such as blood, saliva, and optionally cerebrospinal fluid will be collected. During the study, researchers will monitor various outcomes including ALS functional rating, lung capacity, speech ability, neurological function, brain imaging results, cognitive and behavioral screening, quality of life, and ALS-specific questionnaires. These measurements occur every four months over the year. The study collects comprehensive data to understand the progression of ALS and related disorders, with safety and participant well-being monitored throughout the participation period.

Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS