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Massive ALS biobank aims to unlock secrets of the disease

NCT ID NCT05137665

Knowledge-focused Sponsor: Target ALS Foundation, Inc. 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is creating a large collection of blood, spinal fluid, and urine samples from 800 ALS patients and 200 healthy volunteers. Researchers will also track clinical changes and at-home measures over time. The goal is to provide a valuable resource for scientists worldwide to study ALS and develop future treatments.

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 provide researchers with a rich set of samples and data to better understand ALS and develop new treatments.
What could go wrong
This is an observational study, not a treatment trial. It will not directly benefit participants, and the samples 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 1,000 people

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

Started

Jun 2021

Expected to finish

Dec 2031

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

A biorepository of longitudinal blood (plasma and serum), cerebral spinal fluid (CSF) and urine linked to genetics and longitudinal clinical information that are made available to the research community will be made from ALS and healthy control participants. This is a large multi-center study, including several international sites with the goal of developing a robust sample set from genetic and racially diverse populations. To enable well-powered biomarker research, the enrollment goal is at least 800 ALS patients and 200 healthy participants in five years.

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.

ALS Participants: 1. Age 18 or older. 2. A diagnosis of ALS in accordance with Gold Coast criteria. 3. Full Vital Capacity (FVC) of ≥30% or at the discretion of the Principal Investigator for the participant's predicted value for gender, height, and age at the time of screening. 4. Ability to provide informed consent and understand the purpose and risks of the study. 5. Ability to comply with study procedures and assessments, in the opinion of the Principal Investigator. Healthy Control Participants: 1. Age 18 or older. 2. No history of neurological disease, in the opinion of the Principal Investigator. 3. No known ALS- associated genetic mutations at the time of consent. 4. Ability to provide informed consent and understand the purpose and risks of the study. 5. Ability to comply with study procedures and assessments, in the opinion of the Principal Investigator.

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis motor neuron disorder movement disorder neurodegenerative disease

As listed by the trial registrant

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

Amyotrophic lateral sclerosis Degenerative disorder Motor neuron disease Movement disorders

How to take part

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

  1. The places running it

    12 sites in 3 countries. 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

  • Barrow Neurological Institute

    RECRUITING

    Phoenix, Arizona, 85013, United States

  • Baylor College of Medicine

    RECRUITING

    Houston, Texas, 77030, United States

  • CHALS-CCT UPR MScience

    RECRUITING

    San Juan, 00935, Puerto Rico

  • Columbia University

    RECRUITING

    New York, New York, 10032, United States

  • Georgetown University

    RECRUITING

    Georgetown, District of Columbia, 20007, United States

  • Instituto Roosevelt

    RECRUITING

    Bogotá, Colombia

  • Massachusetts General Hospital

    RECRUITING

    Boston, Massachusetts, 02114, United States

  • Mayo Clinic

    RECRUITING

    Jacksonville, Florida, 32224, United States

  • Northwestern University

    RECRUITING

    Chicago, Illinois, 60611, United States

  • University of California San Diego

    RECRUITING

    San Diego, California, 92121, United States

  • University of Washington

    RECRUITING

    Seattle, Washington, 98195, United States

  • Washington University

    RECRUITING

    St Louis, Missouri, 63110, United States

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