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Massive ALS study aims to unlock secrets of the disease

NCT ID NCT06578195

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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 is gathering medical information, blood samples, and speech recordings from 2,000 people with ALS and healthy volunteers over two years. The goal is to create a shared resource that scientists can use to better understand ALS and develop new treatments. Participants can take part in person or remotely.

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 study will create a rich database of samples and measurements that could help researchers discover new treatments or biomarkers for ALS.
What could go wrong
This is an observational study, not a treatment trial. It will not directly help participants, and the data may not lead to immediate breakthroughs.

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 2,000 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

An initial cohort of approximately 2000 to 3000 participants will be recruited for this study. This includes at least 1600 symptomatic ALS participants (Cohort 1) and at least 450 control participants (Cohort 2). Though the exact percentages of in-clinic and remote participants are unknown at this time, it is anticipated that approximately 600 of the symptomatic ALS participants and 450 of the control participants will be recruited from the site clinic or local ALS community and will be coming to the sites for study visits. These numbers may differ substantially from the final enrollment numbers based on preference of participants enrolling in the study.

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 for ALS participants: 1. Age 18 years or older 2. Capable of providing informed consent 3. Willing to follow study procedures 4. Diagnosis of ALS by a physician 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) Inclusion Criteria for control participants: 1. Age 18 years or older 2. Capable of providing informed consent 3. Willing to follow study procedures 4. No diagnosis of ALS , Progressive Muscular Atrophy (PMA) or Primary Lateral Sclerosis (PLS) 5. No history of familial ALS/Frontotemporal Dementia (FTD) in a close family member\*\* unless the participant has previously tested negative for the known causative ALS genes. Participants with a family history of singleton ALS are permitted to enroll. * \*\* Defined by the presence of a known ALS causative gene such as C9orf72 in a family member or a family history suggestive of an inherited ALS/FTD syndrome defined by two family members with a history of ALS and/or FTD. 6. 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 for all participants: 1. Significant cognitive impairment, clinical dementia, or unstable psychiatric illness, including psychosis, active suicidal ideation, suicide attempt, or untreated major depression \<= 90 days of screening, that would interfere with the study procedure, according to Investigator's judgement. 2. Clinically significant unstable medical condition (other than ALS) (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.

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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

    37 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

    Contact Email: •••••@•••••

  • Dartmouth Hitchcock Medical Center

    RECRUITING

    Lebanon, New Hampshire, 03756, United States

  • Duke University

    RECRUITING

    Durham, North Carolina, 27705, United States

  • Georgetown University

    RECRUITING

    Washington D.C., District of Columbia, 20007, 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

    Bethseda, Maryland, 20892, United States

  • Northwestern University

    RECRUITING

    Chicago, Illinois, 60611, United States

  • Nova Southeastern University

    RECRUITING

    Davie, Florida, 33314, United States

  • Ohio State University

    RECRUITING

    Colombus, 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

  • Synapticure (Remote Participation Only)

    RECRUITING

    Chicago, Illinois, 60612, 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 San Diego

    RECRUITING

    La Jolla, California, 98037, United States

  • University of California, Irvine

    RECRUITING

    Irvine, California, 92868, United States

  • University of California, Los Angeles

    RECRUITING

    Los Angeles, California, 90095, 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 Pennsylvania

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • University of Utah

    RECRUITING

    Salt Lake City, Utah, 84132, United States

  • University of Washington

    RECRUITING

    Seattle, Washington, 98195, United States

  • Vanderbilt University Medical Center

    RECRUITING

    Nashville, Tennessee, 37232, United States

  • Virginia Commonwealth University

    RECRUITING

    Richmond, Virginia, 23298, United States

  • Washington University

    RECRUITING

    St Louis, Missouri, 63110, United States

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