Massive data dive aims to unlock ALS mysteries

NCT ID NCT03489278

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.

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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 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.

Contacts and locations

Study contacts

  • Contact

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

  • Contact

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

Locations

  • California Pacific Medical Center

    RECRUITING

    San Francisco, California, 94115, United States

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

    Contact

  • Columbia University

    ACTIVE_NOT_RECRUITING

    New York, New York, 10032, United States

  • Duke University

    RECRUITING

    Durham, North Carolina, 27708, United States

    Contact Email: •••••@•••••

    Contact

  • Hennepin County Medical Center

    RECRUITING

    Minneapolis, Minnesota, 55404, United States

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

    Contact

  • Providence Health & Services

    RECRUITING

    Portland, Oregon, 97213, United States

    Contact Email: •••••@•••••

    Contact

  • Stanford University

    RECRUITING

    Palo Alto, California, 94304, United States

    Contact

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

  • University of California, Irvine

    RECRUITING

    Irvine, California, 92868, United States

    Contact

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

  • University of Kansas Medical Center

    RECRUITING

    Kansas City, Kansas, 66205, United States

    Contact

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

  • University of Miami

    RECRUITING

    Miami, Florida, 33136, United States

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

    Contact

  • University of Texas San Antonio Health Science Center

    RECRUITING

    San Antonio, Texas, 78229, United States

    Contact

    Contact Email: •••••@•••••

  • Wake Forest University

    RECRUITING

    Winston-Salem, North Carolina, 27157, United States

    Contact

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