The Pre-symptomatic Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study

Part of paid clinical trials in Miami, Florida.

Sponsor
University of Miami
Study ID
NCT00317616
Status
Recruiting

Conditions

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Apr 30, 2006
Status verified
Mar 2026
Primary completion
Dec 31, 2037
Completion
Dec 31, 2037

Study Design

Enrollment
500 participants (estimated)

Arms

  • Arm: Unaffected individuals from families in which the genetic cause of ALS is known
    This population would include pre-symptomatic individuals at genetic risk for ALS or a related neurodegenerative disorder (i.e., FTD).

Primary Outcome Measure

Risk Factors for Progression to familial ALS [ Time Frame: Years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
University of MiamiMiamiFlorida33136
Anne-Laure Grignon
1-888-413-9315
Danielle Dauphin

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