NCT00317616 · RECRUITING
The Pre-symptomatic Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study
This is an observational study, not a drug test. Researchers follow healthy people from families with inherited ALS (Lou Gehrig's disease) over time. They use MRI, blood draws, spinal taps and cognitive testing to learn what happens before symptoms start. No phase is listed, and no treatment is being given.
You may qualify if
- A member of a family in which a mutation in a gene associated with ALS has been identified.
- No symptoms to suggest the presence of ALS (i.e. study participants must currently be healthy).
- Having at least 50% probability of carrying an ALS associated gene mutation based on family pedigree.
- Willingness to undergo genetic testing, with the option of whether or not to learn the results.
- Willingness and availability to travel to Miami for a few days approximately every 12 to 24 months to complete biomarker procedures (e.g, MRI, blood draws, spinal tab/lumbar puncture, cognitive testing)
You're excluded if
- Diagnosis of ALS
- Any condition or situation which, in the PI's opinion, could confound the biomarker data or may interfere with the individual's participation and compliance with the study protocol, including but not limited to neurological, psychological and/or medical conditions.
The sponsor's own eligibility wording, lightly reformatted. The study team makes the final eligibility decision — worth discussing with your doctor.
Eligibility criteria as of 2026-03-20