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Cure My Disease

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Could this study unlock the secrets of ALS before symptoms start?

NCT ID NCT06581861

Knowledge-focused Sponsor: St. Joseph's Hospital and Medical Center, Phoenix 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Aug 25, 2026 · Updated 4 times

Summary

This study follows 600 adults who are genetically at risk for ALS due to family history. Over three years, researchers collect blood samples, speech recordings, and health data to track early signs of the disease. The goal is to build a rich database that scientists can use to better understand ALS and potentially find ways to prevent or delay it.

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 could help researchers understand early signs of ALS and develop ways to detect or delay the disease in at-risk individuals.
What could go wrong
This is an observational study, not a treatment trial. It may not directly benefit participants, and results may take years to translate into clinical advances.

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 600 people

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

Started

Jul 2024

Expected to finish

Jul 2029

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

Approximately 600 participants are planned for this study enrolled. They are aged 18 years or older, and are at risk of developing ALS.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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: 1. Age 18 years or older 2. Capable of providing informed consent 3. Willing to follow study procedures 4. First-degree relative of a known carrier of any ALS causative gene1 (regardless of whether ALS or FTD has actually been symptomatic in the family) OR First-degree relative of an individual with ALS and/or FTD in a family with a "compelling family history" of ALS/FTD, regardless of whether genetic testing has occurred in symptomatic family members. A "compelling family history" is defined as a pedigree with at least 2 close relatives who had ALS or FTD, with at least one of those family members having had ALS. 5. Access to a smartphone, computer, or tablet, and internet (need not be in the home - access to a public library or other available computer with internet connection is sufficient) Exclusion Criteria: 1. Evidence of neurological signs or symptoms concerning for ALS of FTD, at the discretion of the site investigator which will be communicated to the applicant along with referral for appropriate clinical follow-up. 2. Significant cognitive impairment, clinical dementia, or unstable psychiatric illness, including psychosis, active suicidal ideation, suicide attempt, or untreated major depression \<= 90 days (about 3 months) of screening, which in the opinion of the Investigator would interfere with the study procedures 3. Clinically significant, unstable medical condition (e.g., cardiovascular instability, systemic infection, untreated thyroid dysfunction, malignant and potentially progressive cancer) that would render the participant unlikely to be able to complete 12 months of follow-up, according to Investigator's judgment Exclusion Criteria for Participants Undergoing Optional Lumbar Puncture 1. Medically unable to undergo lumbar puncture (LP) as determined by the site investigator (i.e., bleeding disorder, a skin infection at or near the LP site, known or suspected intracranial or intraspinal tumor or other cause of increased intracranial pressure). 2. Allergy to Lidocaine or other local anesthetic agents. 3. Use of anticoagulant medication or antiplatelet medications (aside from aspirin 81 mg) that cannot be safely withheld prior to lumbar puncture. 4. Blood dyscrasia, abnormal bleeding diathesis, or the use of dialysis for renal failure. 5. Current pregnancy based on participant self-report 6. Clinical judgement of the site investigator that the participant would be unable to undergo multiple lumbar punctures. Inclusion Criteria for Genetic Testing Results Sub-study 1. Age 18 years of age or older 2. Capable of providing informed consent 3. Willing to follow study procedures 4. Currently enrolled in the PREVENT ALS Study

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis

As listed by the trial registrant

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

Amyotrophic lateral sclerosis

How to take part

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

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    32 sites in 2 countries. The list below names each one and where it is.

  3. 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 ↗

  4. 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

Study contacts

  • Contact

    Email: •••••@•••••

Locations

  • Barrow Neurological Institute

    RECRUITING

    Phoenix, Arizona, 85013, United States

  • CHALS-CCT, University of Puerto Rico, Medical Sciences Campus

    RECRUITING

    San Juan, Puerto Rico, 00935, Puerto Rico

  • Columbia University

    RECRUITING

    New York, New York, 10032, United States

  • Dartmouth Hitchcock Medical Center

    RECRUITING

    Lebanon, New Hampshire, 03756, United States

  • Duke University

    RECRUITING

    Durham, North Carolina, 27705, United States

    Contact Email: •••••@•••••

  • Georgetown University

    RECRUITING

    Washington D.C., District of Columbia, 200007, United States

  • Henry Ford Health

    RECRUITING

    Detroit, Michigan, 48202, United States

  • Hospital for Special Care

    RECRUITING

    New Britain, Connecticut, 06053, United States

  • Indiana University

    RECRUITING

    Indianapolis, Indiana, 46202, United States

  • John Hopkins University

    RECRUITING

    Baltimore, Maryland, 21205, United States

  • Massachusetts General Brigham

    RECRUITING

    Boston, Massachusetts, 02145, United States

  • Mayo Clinic

    RECRUITING

    Jacksonville, Florida, 32224, United States

  • Nih/Ninds

    RECRUITING

    Bethesda, Maryland, 20892, United States

  • Northwestern University

    RECRUITING

    Chicago, Illinois, 60611, United States

  • Ohio State University

    RECRUITING

    Columbus, Ohio, 43221, United States

    Contact Email: •••••@•••••

  • Penn State Health

    RECRUITING

    Hershey, Pennsylvania, 17033, United States

  • Providence ALS Center

    RECRUITING

    Portland, Oregon, 97213, United States

  • Saint Alphonsus Regional Medical Center

    RECRUITING

    Boise, Idaho, 83704, United States

  • Temple University

    RECRUITING

    Philadelphia, Pennsylvania, 19140, United States

  • Texas Neurology

    RECRUITING

    Dallas, Texas, 75206, United States

  • University of Alabama Birmingham

    RECRUITING

    Birmingham, Alabama, 35294, United States

  • University of California Irvine

    RECRUITING

    Orange, California, 92868, United States

  • University of California San Diego

    RECRUITING

    La Jolla, California, 92037, United States

  • University of California, San Francisco

    RECRUITING

    San Francisco, California, 94143, United States

  • University of Colorado Anschutz Medical Campus

    RECRUITING

    Aurora, Colorado, 80045, United States

    Contact Email: •••••@•••••

  • University of Michigan

    RECRUITING

    Ann Arbor, Michigan, 48109, United States

  • University of Minnesota

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

  • University of Nebraska Medical Center

    RECRUITING

    Omaha, Nebraska, 68198, United States

  • University of Utah

    RECRUITING

    Salt Lake City, Utah, 84132, United States

  • University of Washington

    RECRUITING

    Seattle, Washington, 98195, United States

  • Virginia Commonwealth University

    RECRUITING

    Richmond, Virginia, 23298, United States

  • Washington University

    RECRUITING

    St Louis, Missouri, 63110, United States

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