Status:

RECRUITING

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

Lead Sponsor:

University of Miami

Collaborating Sponsors:

ALS Association

Conditions:

Amyotrophic Lateral Sclerosis

Eligibility:

All Genders

18+ years

Brief Summary

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)...

Detailed Description

Healthy individuals from fALS families with a known genetic mutation will be included in this study. We encourage people who have previously undergone genetic testing and were found to carry the mutat...

Eligibility Criteria

Inclusion

  • Inclusion Criteria
  • 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)
  • Exclusion Criteria
  • 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.

Exclusion

    Key Trial Info

    Start Date :

    April 1 2006

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ESTIMATED

    End Date :

    December 1 2037

    Estimated Enrollment :

    500 Patients enrolled

    Trial Details

    Trial ID

    NCT00317616

    Start Date

    April 1 2006

    End Date

    December 1 2037

    Last Update

    February 26 2025

    Active Locations (1)

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    University of Miami

    Miami, Florida, United States, 33136