Survey of Current Management of Orthopaedic Complications in CMT Patients

NCT02001038 | Completed

• 1 other identifier: INC 6608
• Study Type: observational
• Target: 16
• Locations: 1 country
• Sites: 1

Brief Summary

Charcot-Marie-Tooth (CMT) disease is the most common inherited peripheral neuropathy. Foot deformities are frequent complications in CMT patients and orthopaedic surgery is often required. As yet there are no systematic studies on the management of orthopaedic complications in CMT patients and the current approach varies between centres. This study is a survey with the aim of understanding the current surgical approach to orthopaedic complications in CMT. The target population includes orthopaedic surgeons who perform surgical procedures for foot deformities in CMT patients attending centres participating in the Inherited Neuropathies Consortium (INC).

Conditions

Charcot-Marie-Tooth Disease

Outcome Measures

Primary Outcomes (1)

• Procedural correlations among orthopaedic surgeons on management of foot deformities in CMT patients

  1 day

Study Arms (1)

Orthopaedic surgeons

Orthopaedic surgeons who perform surgical procedures for foot deformities in CMT patients at participants centres.

Other: Survey

Interventions

Survey OTHER

Orthopaedic surgeons

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Orthopaedic surgeons who perform surgical procedures for foot deformities in CMT patients attending centres participating in INC.

You may qualify if:

• Orthopaedic surgeons who perform surgical procedures for foot deformities in CMT patients attending centres participating in the Inherited Neuropatheis Consortium (INC)
• Willing to complete survey

You may not qualify if:

• Does not read or speak English
• Inability to provide informed consent

Sponsors & Collaborators

• University College London Hospitals: lead
• National Hospital for Neurology and Neurosurgery, London: collaborator
• University of Iowa: collaborator
• Children's Hospital of Philadelphia: collaborator
• University of Pennsylvania: collaborator
• University of Rochester: collaborator
• Dubowitz Neuromuscular Centre: collaborator
• Sydney Children's Hospitals Network: collaborator
• Carlo Besta Neurological Institute: collaborator
• Johns Hopkins University: collaborator
• Vanderbilt University: collaborator
• University of Washington: collaborator
• National Institutes of Health (NIH): collaborator
• Stanford University: collaborator
• Data Management and Coordinating Center (DMCC): collaborator
• Federal, State foundation and industry support: National Institute of Health (NIH), Muscular Dystrophy Association, Charcot Marie Tooth Association: collaborator

Study Sites (1)

National Hospital for Neurology and Neurosurgery

London, WC1N 3BG, United Kingdom

Location

MeSH Terms

Conditions

Charcot-Marie-Tooth Disease

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Hereditary Sensory and Motor Neuropathy; Nervous System Malformations; Nervous System Diseases; Heredodegenerative Disorders, Nervous System; Neurodegenerative Diseases; Polyneuropathies; Peripheral Nervous System Diseases; Neuromuscular Diseases; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Genetic Diseases, Inborn

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Prof Mary Reilly

  National Hospital for Neurology and Neurosurgery

  STUDY CHAIR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor of Clinical Neurology and Consultant Neurologist

Study Record Dates

• First Submitted: November 27, 2013
• First Posted: December 4, 2013
• Study Start: February 1, 2013
• Primary Completion: November 1, 2014
• Study Completion: November 1, 2014
• Last Updated: January 30, 2015

Record last verified: 2015-01

Locations

GB (1)