Data repository for ALS and other motor neuron disorders
ALS/MND Natural History Study Data Repository
This study collects and shares information from people with ALS and other motor neuron disorders to help researchers learn more about these conditions.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Ages | 18 Years to 90 Years |
| Sex | All |
| Sponsor | Massachusetts General Hospital Academic / other |
| Locations | 16 sites (Loma Linda, California and 15 other locations) |
| Trial ID | NCT05966038 on ClinicalTrials.gov |
What this trial studies
This observational study collects and curates data from individuals diagnosed with ALS and other motor neuron disorders at multiple clinical sites. Participants provide baseline information, including demographics and disease history, and undergo regular clinical assessments to gather longitudinal data. The data is captured in the NeuroBANK platform, which allows for the linking of clinical data with biological samples and other studies. Anonymized datasets are then shared with researchers to advance understanding of these conditions.
Who should consider this trial
Good fit: Ideal candidates include individuals with a clinical diagnosis of ALS or other specified motor neuron disorders.
Not a fit: Patients whose conditions do not meet the criteria for any motor neuron disorder will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance the understanding of ALS and other motor neuron diseases, potentially leading to improved treatments and outcomes for patients.
How similar studies have performed: Other studies utilizing similar data repository approaches have shown promise in advancing research in neurodegenerative diseases.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * A clinical diagnosis of El Escorial of suspected, possible, probable, or definite ALS or * Other motor neuron disorders, including but not limited to Spinal-Bulbar Muscular Atrophy (SBMA, Kennedy's disease), Spinal Muscular Atrophy (SMA), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA), and Progressive Bulbar Palsy (PBP) Exclusion Criteria: * Disease does not meet criteria for any motor neuron disorder
Where this trial is running
Loma Linda, California and 15 other locations
- Loma Linda University Health — Loma Linda, California, United States (Recruiting)
- Kaiser Permanente — Los Angeles, California, United States (Recruiting)
- University of Florida — Gainesville, Florida, United States (Recruiting)
- Northwestern University — Chicago, Illinois, United States (Recruiting)
- Lahey Clinic — Burlington, Massachusetts, United States (Recruiting)
- Henry Ford Health System — Detroit, Michigan, United States (Recruiting)
- University of Minnesota — Minneapolis, Minnesota, United States (Recruiting)
- Saint Louis University — St Louis, Missouri, United States (Recruiting)
- Providence ALS Clinic — Portland, Oregon, United States (Recruiting)
- Temple University Lewis Katz School of Medicine — Philadelphia, Pennsylvania, United States (Recruiting)
- University of Pittsburgh — Pittsburgh, Pennsylvania, United States (Recruiting)
- Virginia Commonwealth University — Richmond, Virginia, United States (Recruiting)
- Hadassah Medical Organization — Jerusalem, Israel (Recruiting)
- Tel Aviv Medical Center — Tel Aviv, Israel (Recruiting)
- Centro Clinico NEMO Milano — Milan, Italy (Recruiting)
- Istituti Clinici Scientifici Maugeri SpA — Milan, Italy (Recruiting)
Study contacts
- Principal investigator: Alexander Sherman — Massachusetts General Hospital
- Study coordinator: Natalia Tarasenko
- Email: ntarasenko@mgh.harvard.edu
- Phone: 1617240346
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.