Hereditary Neuropathy Foundation
New York, 10128, United States
Location status: Recruiting
Location contact
Allison Moore
CONTACT
Joy Aldrich
CONTACT
NCT Number: NCT05902351
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.
Interested in participating?
Request InfoAll sexes
Observational
New York, 10128, United States
Location status: Recruiting
Allison Moore
CONTACT
Joy Aldrich
CONTACT
Healthy volunteers accepted: No
Only the study team can determine whether someone qualifies for participation.
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
Time frame: 156 weeks
Patient-Reported Outcomes depending on individual experience I.e. Genetic testing, clinical observation, EMG, family history.
Time frame: 156 weeks
Patient-Reported Observations
Time frame: 156 weeks
Patient-Reported Observations
Time frame: 156 weeks
Patient-Reported Observations
Contact information is provided by the study sponsor or research team.
Allison Moore
CONTACT
Joy Aldrich
CONTACT
Hereditary Neuropathy Foundation
Other Gov
Global Registry for Inherited Neuropathies Natural History Study for Charcot Marie Tooth Disease
OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.
View the official ClinicalTrials.gov record (opens in a new tab)This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.
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