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

NCT ID NCT05966038

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.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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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.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Centro Clinico NEMO Milano

    RECRUITING

    Milan, 20162, Italy

    Contact

    Contact Email: •••••@•••••

  • Hadassah Medical Organization

    RECRUITING

    Jerusalem, 9112001, Israel

    Contact

    Contact Email: •••••@•••••

  • Henry Ford Health System

    RECRUITING

    Detroit, Michigan, 48202, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Istituti Clinici Scientifici Maugeri SpA

    RECRUITING

    Milan, 20138, Italy

    Contact Email: •••••@•••••

    Contact

    Contact

  • Kaiser Permanente

    RECRUITING

    Los Angeles, California, 90027, United States

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Lahey Clinic

    RECRUITING

    Burlington, Massachusetts, 01805, United States

    Contact

    Contact Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Loma Linda University Health

    RECRUITING

    Loma Linda, California, 92354, United States

    Contact

  • Northwestern University

    RECRUITING

    Chicago, Illinois, 60611, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Providence ALS Clinic

    RECRUITING

    Portland, Oregon, 97213, United States

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Saint Louis University

    RECRUITING

    St Louis, Missouri, 63104, United States

    Contact

    Contact Email: •••••@•••••

  • Tel Aviv Medical Center

    RECRUITING

    Tel Aviv, 64239, Israel

    Contact Email: •••••@•••••

    Contact

  • Temple University Lewis Katz School of Medicine

    RECRUITING

    Philadelphia, Pennsylvania, 19140, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Thomas Jefferson University

    RECRUITING

    Philadelphia, Pennsylvania, 19107, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Trinity Health Michigan

    RECRUITING

    Grand Rapids, Michigan, 49503, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • University of Florida

    RECRUITING

    Gainesville, Florida, 32610, United States

    Contact

    Contact Email: •••••@•••••

  • University of Minnesota

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • University of Pittsburgh

    RECRUITING

    Pittsburgh, Pennsylvania, 15360, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Virginia Commonwealth University

    RECRUITING

    Richmond, Virginia, 22908, United States

    Contact Email: •••••@•••••

    Contact