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Natural History Study for Charcot Marie Tooth Disease
Global Registry for Inherited Neuropathies Natural History Study for Charcot Marie Tooth Disease
Who can join
All ages · All sexes
Full eligibility criteria
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
About the study
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.
Sponsor: Hereditary Neuropathy Foundation · Participants: 10,000 · Started: Nov 1, 2013
Contact the study team
- Allison Moore · Phone: 212-722-8396
- Joy Aldrich · Phone: 212-722-8396
Official record on ClinicalTrials.gov — NCT05902351
Locations in the U.S.
| New York | Hereditary Neuropathy Foundation, New York |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.