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NCT00317616

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

Recruiting
Not specifiedAges 18+Observational
University of Miami
~500 participants
Updated 2026-03-20 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Risk Factors for Progression to familial ALS
Measured over Years

Conditions

Amyotrophic Lateral Sclerosis

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Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • University of Miami

    Miami, Floridastudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Michael G Benatar, MD, PhD. · PRINCIPAL_INVESTIGATOR · University of Miami

Who to contact

Anne-Laure M Grignon, MD
[email protected]
1-888-413-9315
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Want this trial checked against your situation?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

Check eligibility for this trial ~2 min · HIPAA-protected · delete anytime
Eligibility criteria

Inclusion

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

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.

What this trial measures

  • Risk Factors for Progression to familial ALSYears