Natural History Study for Charcot Marie Tooth Disease
A legfontosabb adatok
- Hol
- New York (Egyesült Államok)A helyszín megnézése
Helyszínek itt: Egyesült Államok
- Hereditary Neuropathy FoundationNew York, Egyesült ÁllamokContact: Allison MooreRésztvevőt keres
Kérdések a vizsgálat csapatának
- Milyen gyakran kell bejárnom, és egy-egy alkalom mennyi ideig tart?
- Megtérítik az utazási költséget?
- Megtarthatom a saját orvosomat?
- Mi történik, ha ki akarok lépni?
Contact the study team: see the registry record → Contacts and Locations
Oldal nyomtatása az orvosomnakA vizsgálat adatai
- Ki végzi
- Hereditary Neuropathy Foundation
- Azonosító
- NCT05902351
- A regiszteradat frissítve
- 2026. szeptember 17.
- Eredeti leírás
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.A teljes eredeti leírásKevesebb
Global Registry for Inherited Neuropathies Natural History Study for Charcot Marie Tooth Disease
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.
Bevonási feltételek: 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.
Kizáró feltételek: People that do not have Charcot-Marie-Tooth or other Inherited Neuropathies.