Observational study on amyotrophic lateral sclerosis
ALS Translational Research Program
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 |
|---|---|
| Enrollment | 2000 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | ALS Therapy Development Institute Academic / other |
| Locations | 1 site (Watertown, Massachusetts) |
| Trial ID | NCT06885918 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
Not a fit: Patients with significant cognitive impairment that prevents them from understanding the informed consent process may not benefit from this study.
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 performed: 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.
Eligibility criteria
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 this trial is running
Watertown, Massachusetts
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.