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RecruitingNCT04010188Updated Jan 11, 2022

A Registered Cohort Study on Charcot-Marie-Tooth Disease

An observational study in Charcot-Marie-Tooth Disease, sponsored by Ning Wang, MD., PhD.. Recruiting at 1 site in China. Per ClinicalTrials.gov, last updated 2022-01-11.

Sponsored by Ning Wang, MD., PhD. · Observational

From the registry’s dates

  • Started Jul 2019; still recruiting 7 years 4 months later.

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Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
500
Sex
All
01

Study summary

The aim of the study is to analyze the natural history data data from Charcot-Marie-Tooth disease and related disorders in China, to assess the clinical, genetic, epigenetic features of patients with Charcot-Marie-Tooth disease, and to optimize clinical management.

02

Conditions studied

  • Charcot-Marie-Tooth Disease
03

In context

Charcot-Marie-Tooth Disease

113 studies on the registry are indexed under Charcot-Marie-Tooth Disease; 37 are open to participants now.

This study's planned enrollment of 500 is above the median of 120 across 47 observational studies indexed under Charcot-Marie-Tooth Disease.

Browse Charcot-Marie-Tooth Disease studies →

Lead sponsor

Ning Wang, MD., PhD. is the lead sponsor of 9 studies on the registry; 6 are open to participants now.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
Child (0–17), Adult (18–64), Older adult (65+)
Sexes eligible
All
Accepts healthy volunteers
Yes
Sampling method
Non-probability sample

Study population

CMT patients who are diagnosed in the First Affiliated Hospital of Fujian Medical University.

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  • Patients with the clinical diagnosis of Charcot-Marie-Tooth disease
  • Genetic diagnosis of patients with Charcot-Marie-Tooth disease
  • Unrelated healthy controls

Exclusion criteria

Exclusion Criteria:

  • Decline to participate.
  • Other peripheral neuropathy caused by trauma, immunity and toxicosis.
05

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
500 participants (estimated)
Target follow-up
20 Years
Patient registry
Yes
06

What researchers measure

Primary outcomes

  1. The change of Charcot-Marie-Tooth Neuropathy Score (CMTNS) during 6 month

    Charcot-Marie-Tooth Neuropathy Score (CMTNS) was first proposed and validated by Shy et al (Neurology, 2005). to provide a reliable measure of impairment in Charcot-Marie-Tooth (CMT). The CMTNS is composed of 9 items evaluating different functions related to the disease: 5 of impairment ('Sensory Symptoms', 'Pin Sensibility', 'Vibration', 'Strength Arms' and 'Strength Legs'), 2 of activity limitations ('Motor Symptoms Arms' and 'Motor Symptoms Legs') and 2 electrophysiological measures. Each item is scored from 0 to 4 and the total sum of the item scores provides a global measure of disease severity, with higher scores indicating worsening function.

    Time frame: Up to 6 months

07

Study locations

1 of 1 sites recruiting
08

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Started Jul 2019 (actual). Primary completion is estimated for Dec 2039, 245 months after the start.

How these figures are worked out, and which studies are left out of them.

Registered
Jul 4, 2019
First posted
Jul 8, 2019
StartActual
Jul 1, 2019
Primary completionEst.
Dec 31, 2039
CompletionEst.
Dec 31, 2049
Last update
Jan 11, 2022
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Jan 11, 2022, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
09

Registry details

Key details

Study ID
NCT04010188
Lead sponsor
Ning Wang, MD., PhD.
Responsible party
Ning Wang, MD., PhD. (Professor, First Affiliated Hospital of Fujian Medical University) — Sponsor-investigator
First posted
Jul 8, 2019
Start date
Jul 1, 2019
Primary completion
Dec 31, 2039 (estimated)
Completion
Dec 31, 2049 (estimated)
Last update
Jan 11, 2022

Study contacts

Ning Wang, MD, PhD
Contact
ningwang@fjmu.edu.cn
13805015340 ext. 13805015340

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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