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Can we stop ALS before it starts? new study tracks families with genetic risk

NCT ID NCT03865420

Knowledge-focused Sponsor: Columbia University Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study enrolls family members of people with inherited ALS who do not yet have symptoms. Participants receive genetic counseling and testing, and are followed yearly to track when and how symptoms might appear. The goal is to gather information that could one day lead to treatments to prevent or slow ALS.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this research could help scientists develop treatments to prevent or delay ALS in people who carry genetic mutations.
What could go wrong
This is an observational study, not a treatment trial. It may take years to gather enough data, and findings may not lead directly to new therapies.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 300 people

The number the study aims to enrol. It can still change while the study runs.

Started

Sep 2018

Expected to finish

Jan 2027

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Unaffected individuals who have either a family member with a known ALS/FTD-associated gene mutation or have a strong family history of ALS and FTD.

Ages

18 to 105 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Men or women of any race or ethnicity aged 18 or older * No symptoms of ALS or fronto-temporal dementia at enrollment * Scenario 1: has already had genetic testing that identified an ALS-spectrum gene mutation. * Scenario 2: has a first degree relative who was/is an obligate carrier of a familial ALS-spectrum gene mutation. * Scenario 3: has a first degree relative who has/had an ALS-spectrum diagnosis who had a confirmed ALS-spectrum gene mutation or comes from a family with a high burden of ALS-spectrum diagnoses and a known ALS-spectrum gene mutation. * Scenario 4: is deemed to be at high risk for carrying an ALS-spectrum gene mutation as judged by a review of the family structure and genetic information by the study team. * Willing to undergo genetic analysis, with option of whether or not to learn results * Willing to travel to Columbia University Irving Medical Center (CUIMC) every 6-24 months for study procedures * Capable of providing informed consent and following study procedures, or has a legally authorized representative who is able to consent for the subject. Exclusion Criteria for participation in biosample portion of the study: * Known HIV * Known hepatitis B * Known hepatitis C

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Conditions

The condition(s) this trial relates to.

frontotemporal dementia with motor neuron disease amyotrophic lateral sclerosis prevention target

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ALS

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Columbia University

    RECRUITING

    New York, New York, 10032, United States

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