ALS Research Collaborative (ARC)

ALS Therapy Development Institute

Status: Enrolling

Conditions: Motor Neuron Disease; ALS (Amyotrophic Lateral Sclerosis); Amyotrophic Lateral Sclerosis; Motor Neuron Disease, Amyotrophic Lateral Sclerosis; ALS with Frontotemporal Dementia (ALS/FTD)

Study type: Observational

Funder types: Other

Identifiers

NCT06885918

ALSTDI0103

Details and patient eligibility

About

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.

Enrollment: 2,000 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• 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

Exclusion criteria

• Significant cognitive impairment that would prevent individual completion and understanding of the informed consent process.

Trial design

2,000 participants in 3 patient groups

Person living with ALS/MND

Description:

An adult over the age of 18, that has received a diagnosis of ALS or other Motor Neuron Disease from a practicing physician.

Asymptomatic gene carrier

Description:

An adult over the age of 18 who does not have symptoms of ALS and carries a mutation known to be associated with ALS

Healthy Volunteer

Description:

An adult over the age of 18 who does not have any biological connection to ALS or other Motor Neuron Disease, and no significant health problems.