RECRUITING

Natural History Study for Charcot Marie Tooth Disease

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Conditions

Charcot-Marie-Tooth DiseaseCharcot-Marie-ToothCharcot-Marie-Tooth Disease, Type IACharcot-Marie-Tooth Disease Type 2ACharcot-Marie-Tooth Disease Type 2Charcot-Marie-Tooth Disease, Type 2CCharcot-Marie-Tooth Disease Type 2A2BCharcot-Marie-Tooth Disease Type 2B2Charcot-Marie-Tooth Disease Type 2A1Charcot-Marie-Tooth Disease Type 4B1Charcot-Marie-Tooth Disease, Type IBCharcot-Marie-Tooth Disease Type 2B1Charcot-Marie-Tooth Disease Type 2U (Diagnosis)Charcot-Marie-Tooth Disease Type 4ACharcot-Marie-Tooth Disease, Type 4A, Axonal FormCharcot-Marie-Tooth Disease Type 2A2ACharcot-Marie-Tooth Disease Type 2S (Disorder)Charcot-Marie-Tooth Disease and DeafnessCharcot-Marie-Tooth Disease Type 4B2Charcot-Marie-Tooth Disease Type 4HCharcot-Marie-Tooth Disease Type 1FCharcot-Marie-Tooth Disease Type 4CCharcot-Marie-Tooth Disease Type 4ECharcot-Marie-Tooth Disease Type 1DCharcot-Marie-Tooth Disease Type 2Q (Diagnosis)Charcot-Marie-Tooth Disease Type 2A2Charcot-Marie-Tooth Disease Type 2N (Diagnosis)Charcot-Marie-Tooth Disease Type 2B5Charcot-Marie-Tooth Disease Type 2DCharcot-Marie-Tooth Disease Type 4DCharcot-Marie-Tooth Disease Type 2KCharcot-Marie-Tooth Disease Type 2L (Diagnosis)Charcot-Marie-Tooth Disease Type 2TCharcot-Marie-Tooth Disease Type 2ICharcot-Marie-Tooth Disease Type 2JCharcot-Marie-Tooth Disease Type 2ECharcot-Marie-Tooth Disease Type 2GCharcot-Marie-Tooth Disease Type 1CCharcot-Marie-Tooth Disease Type 2RCharcot-Marie-Tooth Disease Type 2O (Diagnosis)Charcot-Marie-Tooth Disease Type 2MCharcot-Marie-Tooth Disease Type 2PCharcot-Marie-Tooth Disease Type 2YCharcot-Marie-Tooth Disease Type 4F (Diagnosis)Charcot-Marie-Tooth Disease Type 4B3Charcot-Marie-Tooth Disease Type 2HHNPPX-Linked Charcot-Marie-Tooth DiseaseInherited NeuropathiesPeripheral NeuropathyCMT

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Global Registry for Inherited Neuropathies Natural History Study for Charcot Marie Tooth Disease

Quick Facts

Study Start:2013-11-01
Study Completion:2029-12-31
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05902351

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. Age 18 years or older
  2. Willing and able to provide informed consent
  3. Able to understand and follow study procedures
  4. Stable medical condition
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Allison Moore
CONTACT
212-722-8396
allison@hnf-cure.org
Joy Aldrich
CONTACT
212-722-8396
JoyAldrich@hnf-cure.org

Principal Investigator

Allison Moore
PRINCIPAL_INVESTIGATOR
Hereditary Neuropathy Foundation

Study Locations (Sites)

Hereditary Neuropathy Foundation
New York, New York, 10128
United States

Collaborators and Investigators

Sponsor: Hereditary Neuropathy Foundation

  • Allison Moore, PRINCIPAL_INVESTIGATOR, Hereditary Neuropathy Foundation

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2013-11-01
Study Completion Date2029-12-31

Study Record Updates

Study Start Date2013-11-01
Study Completion Date2029-12-31

Terms related to this study

Keywords Provided by Researchers

  • Inherited Neuropathies
  • Peripheral Neuropathy
  • Charcot-Marie-Tooth
  • Charcot-Marie-Tooth Disease
  • CMT

Additional Relevant MeSH Terms

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