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Cure My Disease

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Massive data dive aims to unlock ALS mysteries

NCT ID NCT03489278

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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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

Summary

This study gathers information from the medical records of 1,200 people with ALS and similar conditions. Researchers will use this data to better understand the disease and improve future studies. No experimental treatments are given—the goal is simply to learn from real-world patient care.

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 1,200 people

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

Started

Feb 2018

Expected to finish

Jun 2034

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

Affected patients receiving care at a clinical center that uses Epic as EHR.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

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: * Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy). * Receiving care at a clinical center that uses Epic as its EHR. * Able and willing to provide informed consent (or informed consent obtainable from a designated proxy). Exclusion Criteria: * Inability to understand English and/or Spanish

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Get notified about this study

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis frontotemporal dementia frontotemporal dementia with motor neuron disease 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.

ALS-frontotemporal dementia Amyotrophic lateral sclerosis 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 places running it

    10 sites. 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

  • California Pacific Medical Center

    RECRUITING

    San Francisco, California, 94115, United States

  • Columbia University

    ACTIVE_NOT_RECRUITING

    New York, New York, 10032, United States

  • Duke University

    RECRUITING

    Durham, North Carolina, 27708, United States

  • Hennepin County Medical Center

    RECRUITING

    Minneapolis, Minnesota, 55404, United States

  • Providence Health & Services

    RECRUITING

    Portland, Oregon, 97213, United States

  • Stanford University

    RECRUITING

    Palo Alto, California, 94304, United States

  • University of California, Irvine

    RECRUITING

    Irvine, California, 92868, United States

  • University of Kansas Medical Center

    RECRUITING

    Kansas City, Kansas, 66205, United States

  • University of Miami

    RECRUITING

    Miami, Florida, 33136, United States

  • University of Texas San Antonio Health Science Center

    RECRUITING

    San Antonio, Texas, 78229, United States

  • Wake Forest University

    RECRUITING

    Winston-Salem, North Carolina, 27157, United States

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