RecruitingNCT05902351
Natural History Study for Charcot Marie Tooth Disease
Global Registry for Inherited Neuropathies Natural History Study for Charcot Marie Tooth Disease
Sponsor
Hereditary Neuropathy Foundation
Enrollment
10,000 participants
Start Date
Nov 1, 2013
Study Type
OBSERVATIONAL
Conditions
Charcot-Marie-ToothCharcot-Marie-Tooth diseaseCharcot-Marie-Tooth Disease, Type IACharcot-Marie-Tooth Disease Type 2ACharcot-Marie-Tooth Disease Type 2Charcot-Marie-Tooth Disease, Type 2CCharcot-Marie-Tooth Disease Type 2A2BCharcot-Marie-Tooth Disease Type 2B2Charcot-Marie-Tooth Disease Type 2A1Charcot-Marie-Tooth Disease Type 4B1Charcot-Marie-Tooth Disease, Type IBCharcot-Marie-Tooth Disease Type 2B1Charcot-Marie-Tooth Disease Type 2U (Diagnosis)Charcot-Marie-Tooth Disease Type 4ACharcot-Marie-Tooth Disease, Type 4A, Axonal FormCharcot-Marie-Tooth Disease Type 2A2ACharcot-Marie-Tooth Disease Type 2S (Disorder)Charcot-Marie-Tooth Disease and DeafnessCharcot-Marie-Tooth Disease Type 4B2Charcot-Marie-Tooth Disease Type 4HCharcot-Marie-Tooth Disease Type 1FCharcot-Marie-Tooth Disease Type 4CCharcot-Marie-Tooth Disease Type 4ECharcot-Marie-Tooth Disease Type 1DCharcot-Marie-Tooth Disease Type 2Q (Diagnosis)Charcot-Marie-Tooth Disease Type 2A2Charcot-Marie-Tooth Disease Type 2N (Diagnosis)Charcot-Marie-Tooth Disease Type 2B5Charcot-Marie-Tooth Disease Type 2DCharcot-Marie-Tooth Disease Type 4DCharcot-Marie-Tooth Disease Type 2KCharcot-Marie-Tooth Disease Type 2L (Diagnosis)Charcot-Marie-Tooth Disease Type 2TCharcot-Marie-Tooth Disease Type 2ICharcot-Marie-Tooth Disease Type 2JCharcot-Marie-Tooth Disease Type 2ECharcot-Marie-Tooth Disease Type 2GCharcot-Marie-Tooth Disease Type 1CCharcot-Marie-Tooth Disease Type 2RCharcot-Marie-Tooth Disease Type 2O (Diagnosis)Charcot-Marie-Tooth Disease Type 2MCharcot-Marie-Tooth Disease Type 2PCharcot-Marie-Tooth Disease Type 2YCharcot-Marie-Tooth Disease Type 4F (Diagnosis)Charcot-Marie-Tooth Disease Type 4B3Charcot-Marie-Tooth Disease Type 2HHNPPX-Linked Charcot-Marie-Tooth Disease
Summary
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.
Eligibility
Inclusion Criteria4
- 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 Criteria1
- People that do not have Charcot-Marie-Tooth or other Inherited Neuropathies
Interested in this trial?
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Locations(1)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT05902351
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