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Biggest ALS gene study aims to unlock disease secrets

NCT ID NCT02327845

Knowledge-focused Sponsor: University of Miami Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 27, 2026

Summary

This study looks at people with ALS and similar diseases like frontotemporal dementia and hereditary spastic paraplegia. Researchers want to understand how genes affect the disease and find biological markers (biomarkers) to help develop future treatments. About 708 participants, including family members, will provide data over time.

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

708 people

The number who actually took part.

Start date

Apr 2015

Expected to finish

Aug 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

Patients with ALS or a related neurodegenerative disorder, including FTD, HSP, PLS, PMA and MSP. Select family members of affected participants.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: * Member of at least one of the following categories: 1. Individuals with a clinical diagnosis of ALS or a related disorder, including FTD, HSP, PLS, PMA and MSP (sporadic or familial). 2. Family member of an enrolled affected individual. * Able and willing to comply with relevant procedures. Exclusion Criteria: * Affected with end or late stage disease. * A condition or situation which, in the PI's opinion, could confound the study finding or may interfere significantly with the individual's participation and compliance with the study protocol. This includes (but is not limited to) neurological, psychological and/or medical conditions.

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis frontotemporal dementia hereditary spastic paraplegia inclusion body myopathy with early-onset Paget disease with or without frontotemporal dementia 2 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 dementia Hereditary spastic paraplegia Multisystem proteinopathy Primary lateral sclerosis Progressive muscular atrophy

Contacts and locations

Locations

  • California Pacific Medical Center (CPMC)

    San Francisco, California, 94115, United States

  • Cleveland Clinic

    Cleveland, Ohio, 44195, United States

  • Eberhard Karls University of Tübingen

    Tübingen, Germany

  • Kansas University Medical Center (KUMC)

    Kansas City, Kansas, 66160, United States

  • Stanford University

    Palo Alto, California, 94304, United States

  • Twin Cities ALS Research Consortium

    Minneapolis, Minnesota, 55415, United States

  • University of California San Diego (UCSD)

    San Diego, California, 92093, United States

  • University of Cape Town

    Cape Town, South Africa

  • University of Iowa

    Iowa City, Iowa, 52242, United States

  • University of Miami

    Miami, Florida, 33136, United States

  • University of Pennsylvania

    Philadelphia, Pennsylvania, 19104, United States

  • University of Texas Health Science Center San Antonio (UTHSCSA)

    San Antonio, Texas, 78229, United States

  • University of Texas Southwestern (UTSW)

    Dallas, Texas, 75390, United States

  • University of Virginia (UVA)

    Charlottesville, Virginia, 22908, United States

  • Wake Forest University

    Winston-Salem, North Carolina, 27157, United States

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