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ALS Research Collaborative

This study, called the ALS Research Collaborative, is an observational study (meaning it watches how a disease progresses naturally) focused on amyotrophic lateral sclerosis (ALS) and other motor neuron diseases (MND). The goal is to learn more about the disease to help with finding new drugs, identifying biomarkers (signs in the body that can indicate disease), and improving ways to measure treatment success. You can join if you are 18 or older, can communicate in written English, and have a diagnosis of ALS/MND or an ALS-related genetic mutation. The study measures changes in your ALS Functional Rating Scale - Revised (ALSFRS-R) scores monthly for about one year to see how the disease progresses. The current recruitment status is unclear.

Study design
This is an observational study planning to enroll 2000 participants. It collects data remotely from adults living with ALS, other motor neuron diseases, or those with an ALS-associated mutation.
What's involved
You will contribute prospective and retrospective data remotely. Your ALS Functional Rating Scale - Revised (ALSFRS-R) will be measured monthly, through study completion, for an average of 1 year.
Compensation
Not stated in the trial record.
Follow-up
Your ALS Functional Rating Scale - Revised (ALSFRS-R) will be measured monthly, through study completion, for an average of 1 year.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06885918

ALS Research Collaborative

Recruiting
Not specifiedAges 18+Observational
ALS Therapy Development Institute
~2,000 participants
Updated 2025-03-20 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
ALS Functional Rating Scale - Revised (ALSFRS-R)
Measured over Monthly, through study completion, an average of 1 year

Conditions

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

Explore related trials

Amyotrophic Lateral SclerosisMotor Neuron DiseaseALS-associated mutation

NCT06885918

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • ALS Therapy Development Institute

    Watertown, Massachusettsstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Fernando G Vieira, M.D. · PRINCIPAL_INVESTIGATOR · ALS Therapy Development Institute

Who to contact

Alan S Premasiri, M.S.
[email protected]
617-441-7200 · ext. 7291
Email the study team

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Eligibility criteria

Inclusion

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

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

What this trial measures

  • ALS Functional Rating Scale - Revised (ALSFRS-R)Monthly, through study completion, an average of 1 year

    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.