ALS Translational Research Program studying ALS, Motor Neuron Diseases, and related gene carriers in adults

What this Trial Is About

Researchers are conducting a natural history study to better understand the biological and clinical aspects of amyotrophic lateral sclerosis ALS and related motor neuron diseases MND. This study aims to support drug discovery, biomarker identification, and validation of outcome measures. Adults living with ALS or MND, those carrying known ALS-related genetic mutations without symptoms, and healthy volunteers participate remotely in this observational research sponsored by the ALS Therapy Development Institute. Participants include adults over 18 years old who fall into one of three groups individuals diagnosed with ALS or MND, adults carrying an ALS-associated mutation without symptoms, and healthy adults with no biological connection to ALS or significant health issues. Data collection involves monthly assessments, surveys, and monitoring over an average period of one year or more, depending on the measure. Throughout the study, participants complete monthly evaluations using tools like the ALS Functional Rating Scale - Revised ALSFRS-R, speech scoring based on machine learning, and limb-based accelerometry. They also fill out surveys about medications, supplements, clinical trial participation, and social or environmental factors at specified intervals. These assessments help researchers track disease progression and gather comprehensive information to advance ALS research and potential treatments.

ALS Research Collaborative