Massive CMT study aims to map disease progression over five years

NCT ID NCT01193075

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This observational study follows up to 5,000 people with Charcot Marie Tooth disease (CMT) types 1B, 2A, 4A, and 4C over five years. Researchers will measure symptoms, nerve function, and disability using special scales to understand how the disease changes over time. The goal is to improve future clinical trials and care for people with CMT.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this study could provide crucial data to design better treatments and clinical trials for CMT.

What could go wrong

This is an observational study, not testing any treatment. It may not directly lead to new therapies, and results depend on long-term participation.

Disclaimer Read more

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.

Charcot-Marie-Tooth disease Charcot-Marie-Tooth disease type 1B Charcot-Marie-Tooth disease type 2A1 Charcot-Marie-Tooth disease type 4A Charcot-Marie-Tooth disease type 4C hereditary motor and sensory neuropathy

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

  • C. Besta Neurological Institute

    RECRUITING

    Milan, Milan, Italy

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

    Contact

  • Cedars-Sinai Medical Center

    RECRUITING

    Los Angeles, California, 90048, United States

    Contact

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

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

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

    Contact

  • Children's National Hospital

    RECRUITING

    Washington D.C., District of Columbia, 20010, United States

    Contact

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

  • Harvard/Massachusetts General Hospital

    RECRUITING

    Boston, Massachusetts, 02114, United States

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

    Contact

  • Johns Hopkins University

    RECRUITING

    Baltimore, Maryland, 21205, United States

    Contact

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

  • National Hospital of Neurology and Neurosurgery

    RECRUITING

    London, England, WC1N 3BG, United Kingdom

    Contact Email: •••••@•••••

    Contact

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

  • Nemours Children's Health

    RECRUITING

    Orlando, Florida, 32827, United States

    Contact Email: •••••@•••••

    Contact

  • Nemours Children's Hospital

    RECRUITING

    Orlando, Florida, 32827, United States

    Contact

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

  • Seattle Children's Hospital

    NOT_YET_RECRUITING

    Seattle, Washington, 98105, United States

    Contact

    Contact Email: •••••@•••••

  • St. Jude Children's Research Hospital

    RECRUITING

    Memphis, Tennessee, 38105-3678, United States

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

    Contact

  • Stanford University

    RECRUITING

    Palo Alto, California, 94305, United States

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

    Contact

  • The Hospital for Sick Children

    RECRUITING

    Toronto, Ontario, M5G 1E8, Canada

    Contact

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

  • University of Colorado Hospital

    RECRUITING

    Aurora, Colorado, 80045, United States

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

    Contact

  • University of Connecticut/Connecticut Children's Medical Center

    RECRUITING

    Hartford, Connecticut, 06106, United States

    Contact

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

  • University of Iowa

    RECRUITING

    Iowa City, Iowa, 52242, United States

    Contact

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

  • University of Miami

    RECRUITING

    Miami, Florida, 33136, United States

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

    Contact

    Contact

  • University of Michigan

    NOT_YET_RECRUITING

    Ann Arbor, Michigan, 48109, United States

    Contact

    Contact Email: •••••@•••••

  • University of Minnesota

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

    Contact

    Contact Email: •••••@•••••

  • University of Pennsylvania

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

    Contact Email: •••••@•••••

    Contact

  • University of Rochester

    RECRUITING

    Rochester, New York, 14642, United States

    Contact Email: •••••@•••••

    Contact

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

  • University of Westmead

    RECRUITING

    Sydney, New South Wales, 2145, Australia

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

    Contact