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Cure My Disease

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Massive data bank launched to unlock secrets of ALS and motor neuron diseases

NCT ID NCT05966038

Knowledge-focused Sponsor: Massachusetts General Hospital 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 is building a large database of health information from 5,000 people with ALS and other motor neuron diseases. Participants share details like symptoms, test results, and disease progression during regular clinic visits. The de-identified data is then shared with researchers worldwide to help them better understand these conditions and develop new treatments.

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 5,000 people

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

Started

Apr 2015

Expected to finish

Dec 2030

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

All people living with ALS/MND at participating multidisciplinary ALS/MND clinics

Ages

18 to 90 years

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: * A clinical diagnosis of El Escorial of suspected, possible, probable, or definite ALS or * Other motor neuron disorders, including but not limited to Spinal-Bulbar Muscular Atrophy (SBMA, Kennedy's disease), Spinal Muscular Atrophy (SMA), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA), and Progressive Bulbar Palsy (PBP) Exclusion Criteria: * Disease does not meet criteria for any motor neuron disorder

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis bulbospinal muscular atrophy Kennedy disease lateral sclerosis motor neuron disorder Papillon-Lefevre disease progressive bulbar palsy progressive muscular atrophy spinal muscular atrophy

As listed by the trial registrant

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

ALS Kennedy disease MND (motor neurone disease) PBP - progressive bulbar palsy PLS Pma - 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

    18 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

  • Centro Clinico NEMO Milano

    RECRUITING

    Milan, 20162, Italy

  • Hadassah Medical Organization

    RECRUITING

    Jerusalem, 9112001, Israel

  • Henry Ford Health System

    RECRUITING

    Detroit, Michigan, 48202, United States

  • Istituti Clinici Scientifici Maugeri SpA

    RECRUITING

    Milan, 20138, Italy

  • Kaiser Permanente

    RECRUITING

    Los Angeles, California, 90027, United States

  • Lahey Clinic

    RECRUITING

    Burlington, Massachusetts, 01805, United States

  • Loma Linda University Health

    RECRUITING

    Loma Linda, California, 92354, United States

  • Northwestern University

    RECRUITING

    Chicago, Illinois, 60611, United States

  • Providence ALS Clinic

    RECRUITING

    Portland, Oregon, 97213, United States

  • Saint Louis University

    RECRUITING

    St Louis, Missouri, 63104, United States

  • Tel Aviv Medical Center

    RECRUITING

    Tel Aviv, 64239, Israel

  • Temple University Lewis Katz School of Medicine

    RECRUITING

    Philadelphia, Pennsylvania, 19140, United States

  • Thomas Jefferson University

    RECRUITING

    Philadelphia, Pennsylvania, 19107, United States

  • Trinity Health Michigan

    RECRUITING

    Grand Rapids, Michigan, 49503, United States

  • University of Florida

    RECRUITING

    Gainesville, Florida, 32610, United States

  • University of Minnesota

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

  • University of Pittsburgh

    RECRUITING

    Pittsburgh, Pennsylvania, 15360, United States

  • Virginia Commonwealth University

    RECRUITING

    Richmond, Virginia, 22908, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.