ASSESS ALL ALS - Longitudinal Biomarker Study for Symptomatic ALS and Control Participants

What this Trial Is About

Researchers are collecting a wide range of samples, clinical information, and measurements from people with symptomatic Amyotrophic Lateral Sclerosis ALS, ALS gene carriers, and control groups without ALS. This observational study, funded by the NIHNINDS and managed by centers at Barrow Neurological Institute and Massachusetts General Hospital, aims to build a large database to support future ALS and related neurological disease research. Participants include symptomatic ALS patients and controls without ALS or related conditions. The study includes three groups ALS participants attending on-site visits at 35 clinical sites, ALS participants participating remotely through video calls with home blood collection, and control participants attending on-site visits. Participants are followed for two years, with medical histories, clinical outcomes, and blood samples collected every four months. They also complete speech recordings and patient-reported outcomes monthly. Optional cerebrospinal fluid samples may be collected from those attending clinics. Participants will undergo regular assessments including ALS Functional Rating Scales, cognitive tests, lung function tests, hand muscle strength measurements, and social and environmental health surveys. These are scheduled at various intervals over the 24-month period. Data collected will help researchers understand ALS progression and support future studies. Participants are monitored closely throughout the study, which involves both on-site and remote visits over two years.

ASSESS ALL ALS Study