Actively Recruiting
The Pre-symptomatic Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study
Led by University of Miami · Updated on 2026-03-20
500
Participants Needed
1
Research Sites
1652 weeks
Total Duration
On this page
Sponsors
U
University of Miami
Lead Sponsor
A
ALS Association
Collaborating Sponsor
AI-Summary
What this Trial Is About
Pre-fALS is a prospective natural history and biomarker study of people not yet affected with ALS, but who are at genetic risk for developing ALS. The investigators aim to recruit unaffected (healthy) people from familial ALS (fALS) pedigrees in which a known genetic mutation associated with ALS has been identified; for this study, a fALS pedigree is one with two biologically related individuals who have or have had ALS and/or FTD. Individuals who may be at genetic risk for ALS and who belong to families with at least one affected family member who has tested positive for a known ALS genetic mutation may also be eligible to participate. Our goal is to study the pre-symptomatic phase, onset and progression of ALS and to learn more about genetic and environmental factors that put people at risk for developing ALS.
CONDITIONS
Official Title
The Pre-symptomatic Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Be a member of a family with a known genetic mutation linked to ALS.
- Be currently healthy with no symptoms suggesting ALS.
- Have at least a 50% chance of carrying an ALS-related gene mutation based on family history.
- Be willing to undergo genetic testing and decide whether or not to learn the results.
- Be willing and able to travel to Miami approximately every 12 to 24 months for biomarker testing (e.g., MRI, blood draws, spinal tap, cognitive tests).
You will not qualify if you...
- Have a diagnosis of ALS.
- Have any condition or situation that could interfere with biomarker data or participation, including neurological, psychological, or medical issues as determined by the study doctor.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
University of Miami
Miami, Florida, United States, 33136
Actively Recruiting
Research Team
A
Anne-Laure M Grignon, MD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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