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Massive ALS data bank launches to speed up research

NCT ID NCT05204017

Knowledge-focused Sponsor: University of Alberta 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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

CAPTURE ALS is a long-term study that collects health data and biological samples from 150 people with ALS and related conditions. The goal is to create a shared resource for researchers worldwide to better understand the disease and develop new treatments. No experimental drugs are given; participants undergo regular assessments like breathing tests, speech recordings, and brain scans.

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 platform could provide researchers worldwide with the data needed to develop better treatments or even a cure for ALS.
What could go wrong
This is an observational study, not a treatment trial. It does not test any new drug or therapy, so there is no direct benefit to participants. Results depend on future research using the collected data.

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 150 people

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

Started

Sep 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

People living with ALS and related motor neuron diseases including ALS-Frontotemporal Dementia (ALS-FTD), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA) and asymptomatic individuals with a known ALS mutation AND Healthy controls that are age and sex matched to patients

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.

\[PATIENTS\] Inclusion Criteria: 1. Has ALS, classified as definite, probable, laboratory-supported probable, or possible ALS according to the revised El Escorial criteria or a related neurodegenerative disorder including ALS-FTD, PLS, PMA or asymptomatic individuals with a known ALS mutation (as previously confirmed during regular clinical care) 2. Be of the age of majority in their province of residence/treatment 3. Have the cognitive capacity to provide informed consent 4. Have proficiency in English or French in order to understand study instructions and respond to questionnaires Exclusion Criteria: N/A \[HEALTHY CONTROLS\] Inclusion Criteria: 1. Be between the ages of 40-80 unless age matched to a patient (+/-3 years) who is already enrolled 2. Be the age of majority in their province of residence/treatment 3. Have the cognitive capacity to provide informed consent 4. Have proficiency in English of French to understand study instructions and respond to questionnaires Exclusion Criteria: 1. A history of a neurological disease, including Central Nervous System disease (e.g., stroke, head injury, epilepsy) or Peripheral Nervous System disease (neuropathy, myopathy) 2. A history of psychiatric disease (e.g. depression, bipolar disease) that is clinically diagnosed and/or with the current use of psychiatric medications (e.g. antidepressants) for an indication of a psychiatric disease. 3. Subjects ineligible for an MRI due to a pacemaker or other contraindication according to local MRI policies of the study centre. 4. Significant claustrophobia that would prohibit an MRI (subjects will be required to lie in an MRI scanner for approximately one hour).

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis Disease Progression frontotemporal dementia lateral sclerosis motor neuron disorder progressive muscular atrophy spinal muscular atrophy

As listed by the trial registrant

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

Amyotrophic lateral sclerosis Frontotemporal degeneration Primary lateral sclerosis Progressive muscular atrophy

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

    4 sites. 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

  • CHU de Quebec -Universite de Laval

    RECRUITING

    Québec, Quebec, G1J 1Z, Canada

  • McGill University / Montreal Neurological Institute and Hospital

    RECRUITING

    Montreal, Quebec, H4A2H6, Canada

  • University of Alberta

    RECRUITING

    Edmonton, Alberta, T6G 2B7, Canada

  • University of Toronto / Sunnybrook Health Sciences Centre

    RECRUITING

    Toronto, Ontario, M4N 3M5, Canada

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