Observational study on amyotrophic lateral sclerosis
Official title: ALS Translational Research Program
Run by ALS Therapy Development Institute · NCT06885918 · Data updated 2026-11-12
This study is collecting health information from people with ALS, those with related genetic mutations, and healthy volunteers to help improve treatments and understand the disease better.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 2000 (estimated) |
| Sponsor | ALS Therapy Development Institute Academic / other |
| Locations | 1 site (Watertown, Massachusetts) |
| Status | Recruiting |
| Started | September 12, 2014 |
| Main results expected | January 31, 2035 |
| Study ends | January 31, 2035 |
| Registry record updated | March 20, 2025 |
| Trial ID | NCT06885918 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are adults aged 18 and older with a diagnosis of ALS or motor neuron disease, or known carriers of ALS-associated mutations.
✕Probably not a fit
Patients with significant cognitive impairment that prevents them from understanding the informed consent process may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to gather extensive biological and clinical data on amyotrophic lateral sclerosis (ALS) and related motor neuron diseases. Participants, including adults diagnosed with ALS, those with known mutations associated with ALS, and healthy volunteers, will contribute both prospective and retrospective data remotely. The findings from this study are intended to enhance drug discovery, identify biomarkers, and validate outcome measures for ALS. The study is sponsored by the ALS Therapy Development Institute.
Why it matters
Potential benefit: If successful, this study could significantly advance the understanding and treatment of ALS, leading to improved patient outcomes.
How similar studies have gone: Other studies focusing on the natural history of ALS and related diseases have shown promise in advancing understanding and treatment options, indicating that this approach is supported by prior research.
Who can join: the full rules
Show full inclusion / exclusion criteria
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.
Where it's running
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ALS Therapy Development Institute
Watertown, Massachusetts, United States Recruiting
Study contacts
- Principal investigator: Fernando G Vieira, M.D. — ALS Therapy Development Institute
- Study coordinator: Alan S Premasiri, M.S.
- Email: apremasiri@als.net
- Phone: 617-441-7200
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.