The goal of this natural history study is to learn more about the biological and clinical aspects of amyotrophic lateral sclerosis (ALS). This study's findings will help with drug discovery, biomarker discovery, and outcome measure validation. Adults living with ALS, other motor neuron diseases (MND), a known mutation related to ALS and healthy volunteers contribute prospective and retrospective data to this study remotely. The study is sponsored and conducted by the ALS Therapy Development Institute.
18 years of age or older
Can communicate in written English
Has a diagnosis of ALS/MND or is a known carrier of an ALS associated mutation
Significant cognitive impairment that would prevent individual completion and understanding of the informed consent process.
Participants can be located anywhere but require internet access.
Case-control
Other
Not listed
ALS Functional Rating Scale - Revised (ALSFRS-R)
A questionnaire completed by the participant that assesses 12 daily functions of living on a 0 (severe symptoms) to 4 (minimal to no symptoms) integer scale.
Machine-Learning Based Speech Scoring
Participants submit a scripted voice recording of 5 different, short phrases that are then scored by a machine-learning based algorithm that assess dysarthria on a non-integer scale of 0 (fully impaired) to 4 (normal speech)
Limb-based Accelerometry
Participants wear four, ActiGraph devices on each limb. Passive and active (video-directed) wear time data is collected over one week. The devices measure acceleration and represent the strength of each limb during movement. Outputs include activity counts and raw acceleration data.
Medications, Supplements, and Clinical Trial Participation Surveys
Participants complete questionnaires describing usage information about medications and supplements they have taken and are currently taking, as well as clinical trial participation.
Social and Environmental Surveys
Participants complete questionnaires about their familial, educational, and geographical background, as well as lifestyle habits and past medical conditions and injuries. These are non-current factors that may have an affect on current health outcomes.
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