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Global registry aims to map the full course of Charcot-Marie-Tooth disease

NCT ID NCT05902351

Knowledge-focused Sponsor: Hereditary Neuropathy Foundation 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Sep 17, 2026 · Last updated Sep 18, 2026 · Updated 1 time

Summary

Researchers are building a global registry to collect patient-reported surveys, genetic test results, and medical records from people with Charcot-Marie-Tooth disease and related inherited neuropathies. The study is open to children and adults with a confirmed or suspected diagnosis. By gathering data on symptoms, diagnosis, and daily impact, the registry aims to help scientists understand the disease and guide future research toward a cure.

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 the registry succeeds, researchers could gain a clearer picture of how Charcot-Marie-Tooth progresses and how it affects daily life, which may help guide future treatment research.
What could go wrong
This is an observational registry, not a treatment trial, so it cannot prove that any therapy works. The data depend on what participants report, which can be incomplete or inconsistent.

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 10,000 people

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

Started

Nov 2013

Expected to finish

Dec 2029

An estimate. End dates often move.

Lead sponsor

A government agency

The lead sponsor is a government body.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

This study is open to anyone that has Charcot-Marie-Tooth Disease or other Inherited Neuropathies.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: Patients will be made aware of the study by HNF and others (referenced above) and invited to participate. Once patients have reviewed and signed electronically the informed consent document, it is attached to their file. All affected individuals with CMT/IN are eligible to participate in GRIN with proper informed consent. Children, adolescents and adults with either a confirmed diagnosis or suspected to have CMT/IN are eligible with parent and/or guardian consent. Individuals that have been clinically diagnosed through family history and/or standard clinical testing (e.g. neuro exam, EMG, NCS) and/or genetically tested or suspected to have CMT/IN (note: many mutations have not been identified yet) are eligible. Exclusion Criteria: People that do not have Charcot-Marie-Tooth or other Inherited Neuropathies

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Conditions

The condition(s) this trial relates to.

autosomal dominant Charcot-Marie-Tooth disease type 2K autosomal dominant Charcot-Marie-Tooth disease type 2M Charcot-Marie-Tooth disease Charcot-Marie-Tooth disease and deafness Charcot-Marie-Tooth disease axonal type 2C Charcot-Marie-Tooth disease axonal type 2H Charcot-Marie-Tooth disease axonal type 2L Charcot-Marie-Tooth disease axonal type 2N Charcot-Marie-Tooth disease axonal type 2O Charcot-Marie-Tooth disease axonal type 2P Charcot-Marie-Tooth disease axonal type 2Q Charcot-Marie-Tooth disease axonal type 2S Charcot-Marie-Tooth disease axonal type 2U Charcot-Marie-Tooth disease type 1A Charcot-Marie-Tooth disease type 1B Charcot-Marie-Tooth disease type 1C Charcot-Marie-Tooth disease type 1D Charcot-Marie-Tooth disease type 1F Charcot-Marie-Tooth disease type 2 Charcot-Marie-Tooth disease type 2A1 Charcot-Marie-Tooth disease type 2A2 Charcot-Marie-Tooth disease type 2B1 Charcot-Marie-Tooth disease type 2B2 Charcot-Marie-Tooth disease type 2B5 Charcot-Marie-Tooth disease type 2D Charcot-Marie-Tooth disease type 2E Charcot-Marie-Tooth disease type 2I Charcot-Marie-Tooth disease type 2J Charcot-Marie-Tooth disease type 2R Charcot-Marie-Tooth disease type 2T Charcot-Marie-Tooth disease type 2Y Charcot-Marie-Tooth disease type 4A Charcot-Marie-Tooth disease type 4B1 Charcot-Marie-Tooth disease type 4B2 Charcot-Marie-Tooth disease type 4B3 Charcot-Marie-Tooth disease type 4C Charcot-Marie-Tooth disease type 4D Charcot-Marie-Tooth disease type 4E Charcot-Marie-Tooth disease type 4F Charcot-Marie-Tooth disease type 4H Charcot-Marie-Tooth disease type X Charcot-Marie-Tooth disease, axonal, autosomal recessive, type 2a2b; Charcot-Marie-Tooth disease, axonal, with vocal cord paresis, autosomal recessive Charcot-Marie-Tooth disease, Type 2A Charcot-Marie-Tooth disease, Type 2C Charcot-Marie-Tooth disease, Type 2I Charcot-Marie-Tooth disease, Type 2K Charcot-Marie-Tooth disease, Type 4A, axonal form Charcot-Marie-Tooth disease-hearing loss-intellectual disability syndrome disease Emery-Dreifuss muscular dystrophy 2, autosomal dominant hereditary neuropathy with liability to pressure palsies peripheral nervous system disorder

As listed by the trial registrant

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

Charcot Marie Tooth disease (CMT) Charcot-Marie-Tooth Charcot-Marie-Tooth disease Charcot-Marie-Tooth disease and deafness Charcot-Marie-Tooth disease type 1C Charcot-Marie-Tooth disease type 1D Charcot-Marie-Tooth disease type 1F Charcot-Marie-Tooth disease type 2 Charcot-Marie-Tooth disease type 2A Charcot-Marie-Tooth disease type 2A1 Charcot-Marie-Tooth disease type 2A2 Charcot-Marie-Tooth disease type 2A2A Charcot-Marie-Tooth disease type 2A2B Charcot-Marie-Tooth disease type 2B1 Charcot-Marie-Tooth disease type 2B2 Charcot-Marie-Tooth disease type 2B5 Charcot-Marie-Tooth disease type 2D Charcot-Marie-Tooth disease type 2E Charcot-Marie-Tooth disease type 2G Charcot-Marie-Tooth disease type 2H Charcot-Marie-Tooth disease type 2I Charcot-Marie-Tooth disease type 2J Charcot-Marie-Tooth disease type 2K Charcot-Marie-Tooth disease type 2L (diagnosis) Charcot-Marie-Tooth disease type 2M Charcot-Marie-Tooth disease type 2N (diagnosis) Charcot-Marie-Tooth disease type 2O (diagnosis) Charcot-Marie-Tooth disease type 2p Charcot-Marie-Tooth disease type 2q (diagnosis) Charcot-Marie-Tooth disease type 2R Charcot-Marie-Tooth disease type 2S (disorder) Charcot-Marie-Tooth disease type 2T Charcot-Marie-Tooth disease type 2U (diagnosis) Charcot-Marie-Tooth disease type 2Y Charcot-Marie-Tooth disease type 4A Charcot-Marie-Tooth disease type 4B1 Charcot-Marie-Tooth disease type 4B2 Charcot-Marie-Tooth disease type 4B3 Charcot-Marie-Tooth disease type 4C Charcot-Marie-Tooth disease type 4D Charcot-Marie-Tooth disease type 4E Charcot-Marie-Tooth disease type 4F (diagnosis) Charcot-Marie-Tooth disease type 4H Charcot-Marie-Tooth disease, type 2C Charcot-Marie-Tooth disease, type 4A, axonal form Charcot-Marie-Tooth disease, type IA Charcot-Marie-Tooth disease, type IB HNPP X-linked Charcot-Marie-Tooth disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. 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

  • Hereditary Neuropathy Foundation

    RECRUITING

    New York, New York, 10128, United States

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