An observational study in Charcot-Marie-Tooth Disease, Charcot-Marie-Tooth and Charcot-Marie-Tooth Disease, Type IA, sponsored by Hereditary Neuropathy Foundation. Recruiting at 1 site in United States. Per ClinicalTrials.gov, last updated 2026-09-17.
Sponsored by Hereditary Neuropathy Foundation · Observational
The goal of this Natural History Study for Charcot-Marie-Tooth is to acquire, record, and analyze patient-reported data and associated genetic reports, Electronic Health Records (EHRs) and clinical notes to identify the burden, diagnostic journey, and prevalence of disease that will aid scientists in their work toward finding a cure.
Participants will be asked to complete a Natural History Survey.
113 studies on the registry are indexed under Charcot-Marie-Tooth Disease; 38 are open to participants now.
This study's planned enrollment of 10,000 is above the median of 120 across 47 observational studies indexed under Charcot-Marie-Tooth Disease.
Browse Charcot-Marie-Tooth Disease studies →This is the only study on the registry with Hereditary Neuropathy Foundation as lead sponsor.
Counted across the registry records on this site, refreshed daily.
This study is open to anyone that has Charcot-Marie-Tooth Disease or other Inherited Neuropathies.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
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 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
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Identify the type of CMT
Patient-Reported Outcomes depending on individual experience I.e. Genetic testing, clinical observation, EMG, family history.
Time frame: 156 weeks
Disease Symptoms
Patient-Reported Observations
Time frame: 156 weeks
Impact of symptoms on Activities of Daily Living
Patient-Reported Observations
Time frame: 156 weeks
Associated Comorbidities
Patient-Reported Observations
Time frame: 156 weeks
Plan to share: Undecided
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.