Understanding Charcot-Marie-Tooth Disease through patient data

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to gather and analyze patient-reported data, genetic reports, Electronic Health Records (EHRs), and clinical notes related to Charcot-Marie-Tooth Disease (CMT). By documenting the burden and diagnostic journey of individuals with CMT, the study seeks to enhance understanding of the disease's prevalence and characteristics. Participants will complete a Natural History Survey to contribute valuable insights that could inform future research and potential treatments.

Why it matters

Who can join: the full rules

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

Where it's running

• Hereditary Neuropathy Foundation
  New York, New York, United States Recruiting

Study contacts

• Principal investigator: Allison Moore — Hereditary Neuropathy Foundation
• Study coordinator: Allison Moore
• Email: allison@hnf-cure.org
• Phone: 212-722-8396

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• 8-week lower-limb resistance program for young people with Charcot–Marie–Tooth disease

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.