Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS A Long-Term Observational Study Collecting Data and Biosamples for ALS Research

What this Trial Is About

Researchers are conducting a long-term observational study to better understand the progression of Amyotrophic Lateral Sclerosis (ALS) and related disorders, including Primary Lateral Sclerosis, Progressive Muscular Atrophy, and Frontotemporal Degeneration. The study aims to collect and analyze extensive multimodal data and biosamples to support future ALS research efforts across Canada and worldwide through a data sharing platform called CAPTURE ALS. Participants with ALS or related neurodegenerative conditions will attend up to five in-person visits over one year, including screening and visits at 0, 4, 8, and 12 months. Healthy volunteers matched by age will attend three visits at screening, 0, and 8 months. During these visits, participants will undergo MRI scans, cognitive and speech tests, specialized clinical evaluations for ALS patients, and complete health questionnaires. Biosamples such as blood, saliva, and optionally cerebrospinal fluid will be collected. Throughout the study, researchers will assess disease progression using tools like the ALS Functional Rating Scale-Revised, forced vital capacity, neurological exams, MRI scans, and cognitive and quality of life questionnaires, all conducted every four months for one year. This continuous monitoring and data collection will provide a detailed picture of ALS progression and impact, supporting future research and potential treatments.

Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS