Natural History Study for Charcot Marie Tooth Disease

Part of paid clinical trials in New York, New York.

Sponsor
Hereditary Neuropathy Foundation
Study ID
NCT05902351
Status
Recruiting
Apply to this trial

Conditions

  • Charcot-Marie-Tooth
  • Charcot-Marie-Tooth Disease
  • Charcot-Marie-Tooth Disease Type 1C
  • Charcot-Marie-Tooth Disease Type 1D
  • Charcot-Marie-Tooth Disease Type 1F
  • Charcot-Marie-Tooth Disease Type 2
  • Charcot-Marie-Tooth Disease Type 2A
  • Charcot-Marie-Tooth Disease Type 2A1
  • Charcot-Marie-Tooth Disease Type 2A2
  • Charcot-Marie-Tooth Disease Type 2A2A
  • Charcot-Marie-Tooth Disease Type 2A2B
  • Charcot-Marie-Tooth Disease Type 2B1
  • Charcot-Marie-Tooth Disease Type 2B2
  • Charcot-Marie-Tooth Disease Type 2B5
  • Charcot-Marie-Tooth Disease Type 2D
  • Charcot-Marie-Tooth Disease Type 2E
  • Charcot-Marie-Tooth Disease Type 2G
  • Charcot-Marie-Tooth Disease Type 2H
  • Charcot-Marie-Tooth Disease Type 2I
  • Charcot-Marie-Tooth Disease Type 2J
  • Charcot-Marie-Tooth Disease Type 2K
  • Charcot-Marie-Tooth Disease Type 2L (Diagnosis)
  • Charcot-Marie-Tooth Disease Type 2M
  • Charcot-Marie-Tooth Disease Type 2N (Diagnosis)
  • Charcot-Marie-Tooth Disease Type 2O (Diagnosis)
  • Charcot-Marie-Tooth Disease Type 2P
  • Charcot-Marie-Tooth Disease Type 2Q (Diagnosis)
  • Charcot-Marie-Tooth Disease Type 2R
  • Charcot-Marie-Tooth Disease Type 2S (Disorder)
  • Charcot-Marie-Tooth Disease Type 2T
  • Charcot-Marie-Tooth Disease Type 2U (Diagnosis)
  • Charcot-Marie-Tooth Disease Type 2Y
  • Charcot-Marie-Tooth Disease Type 4A
  • Charcot-Marie-Tooth Disease Type 4B1
  • Charcot-Marie-Tooth Disease Type 4B2
  • Charcot-Marie-Tooth Disease Type 4B3
  • Charcot-Marie-Tooth Disease Type 4C
  • Charcot-Marie-Tooth Disease Type 4D
  • Charcot-Marie-Tooth Disease Type 4E
  • Charcot-Marie-Tooth Disease Type 4F (Diagnosis)
  • Charcot-Marie-Tooth Disease Type 4H
  • Charcot-Marie-Tooth Disease and Deafness
  • Charcot-Marie-Tooth Disease, Type 2C
  • Charcot-Marie-Tooth Disease, Type 4A, Axonal Form
  • Charcot-Marie-Tooth Disease, Type IA
  • Charcot-Marie-Tooth Disease, Type IB
  • HNPP
  • X-Linked Charcot-Marie-Tooth Disease

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Nov 1, 2013
Status verified
Sep 2024
Primary completion
Dec 31, 2029
Completion
Dec 31, 2029

Study Design

Enrollment
10,000 participants (estimated)

Primary Outcome Measure

Identify the type of CMT [ Time Frame: 156 weeks ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Hereditary Neuropathy FoundationNew YorkNew York10128
Allison Moore
[email protected]
212-722-8396
Joy Aldrich
[email protected]
2127228396

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By research site
Hereditary Neuropathy Foundation· New York, NY

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