ALS Research Collaborative

ALS Therapy Development Institute2,000 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

2,000

Conditions

Amyotrophic Lateral Sclerosis ALS (Amyotrophic Lateral Sclerosis)ALS With Frontotemporal Dementia (ALS/FTD)Motor Neuron Disease Motor Neuron Disease, Amyotrophic Lateral Sclerosis

Eligibility

Sex: ALL

Outcomes

Primary Outcomes

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.

Time frame: Monthly, through study completion, an average of 1 year

Secondary Outcomes

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)

Time frame: Monthly, through study completion, an average of 1 year

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.

Time frame: monthly, through study completion, an average of 6 months

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.

Time frame: quarterly, through study completion, an average of 1 year

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.

Time frame: One-time or quarterly at months 1, 4, 7, 10