NCT05902351 Natural History Study for Charcot Marie Tooth Disease
| NCT ID | NCT05902351 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Hereditary Neuropathy Foundation |
| Condition | Charcot-Marie-Tooth Disease |
| Study Type | OBSERVATIONAL |
| Enrollment | 10,000 participants |
| Start Date | 2013-11-01 |
| Primary Completion | 2029-12-31 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 10,000 participants in total. It began in 2013-11-01 with a primary completion date of 2029-12-31.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief 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 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
Contact & Investigator
Allison Moore
PRINCIPAL INVESTIGATOR
Hereditary Neuropathy Foundation
Frequently Asked Questions
Who can join the NCT05902351 clinical trial?
This trial is open to participants of all sexes, studying Charcot-Marie-Tooth Disease. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT05902351 currently recruiting?
Yes, NCT05902351 is actively recruiting participants. Contact the research team at allison@hnf-cure.org for enrollment information.
Where is the NCT05902351 trial being conducted?
This trial is being conducted at New York, United States.
Who is sponsoring the NCT05902351 clinical trial?
NCT05902351 is sponsored by Hereditary Neuropathy Foundation. The principal investigator is Allison Moore at Hereditary Neuropathy Foundation. The trial plans to enroll 10,000 participants.