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.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Email: •••••@•••••
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Contact
Email: •••••@•••••
Locations
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C. Besta Neurological Institute
RECRUITINGMilan, Milan, Italy
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Cedars-Sinai Medical Center
RECRUITINGLos Angeles, California, 90048, United States
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Children's Hospital of Philadelphia
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
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Children's National Hospital
RECRUITINGWashington D.C., District of Columbia, 20010, United States
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Harvard/Massachusetts General Hospital
RECRUITINGBoston, Massachusetts, 02114, United States
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Johns Hopkins University
RECRUITINGBaltimore, Maryland, 21205, United States
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National Hospital of Neurology and Neurosurgery
RECRUITINGLondon, England, WC1N 3BG, United Kingdom
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Nemours Children's Health
RECRUITINGOrlando, Florida, 32827, United States
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Nemours Children's Hospital
RECRUITINGOrlando, Florida, 32827, United States
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Seattle Children's Hospital
NOT_YET_RECRUITINGSeattle, Washington, 98105, United States
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St. Jude Children's Research Hospital
RECRUITINGMemphis, Tennessee, 38105-3678, United States
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Stanford University
RECRUITINGPalo Alto, California, 94305, United States
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The Hospital for Sick Children
RECRUITINGToronto, Ontario, M5G 1E8, Canada
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University of Colorado Hospital
RECRUITINGAurora, Colorado, 80045, United States
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University of Connecticut/Connecticut Children's Medical Center
RECRUITINGHartford, Connecticut, 06106, United States
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University of Iowa
RECRUITINGIowa City, Iowa, 52242, United States
Contact Email: •••••@•••••
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University of Miami
RECRUITINGMiami, Florida, 33136, United States
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University of Michigan
NOT_YET_RECRUITINGAnn Arbor, Michigan, 48109, United States
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University of Minnesota
RECRUITINGMinneapolis, Minnesota, 55455, United States
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University of Pennsylvania
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
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University of Rochester
RECRUITINGRochester, New York, 14642, United States
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University of Westmead
RECRUITINGSydney, New South Wales, 2145, Australia
More trials for these conditions
Other studies related to the condition(s) this trial covers.
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- Could a simple device ease nerve pain in Charcot-Marie-Tooth?
- Gene study aims to decode rare nerve disorder variations
- CMT tremor mystery: new study aims to uncover hidden symptoms
- New study aims to unravel nerve mysteries in rare diseases
- Wearable tech tracks fatigue in muscle disease patients