Clinical Trial: Development and Validation of a Disability Severity Index for CMT

Study Status: Completed
Recruit Status: Completed
Study Type: Observational

Official Title: Development and Validation of a Disability Severity Index for Charcot Marie Tooth Disease

Brief Summary: It is necessary for outcome measures to accurately reflect the state of health of a person in order for clinical trials to show benefit. The most commonly used outcome measure for Charcot Marie Tooth Disease (CMT) is the CMT Neuropathy Score, which uses cutoffs of points designated as mild (0-10 points), moderate (11-20) or severe (21-36). These terms are arbitrary. This study is looking to base mild, moderate, and severe on what both people affected with CMT and those who provide for people with CMT consider appropriate.

Detailed Summary:
Sponsor: University of Iowa

Current Primary Outcome: Compare Patient and Healthcare Provider impressions of what constitutes mild, moderate and severe impairment in CMT [ Time Frame: 1 year ]

Original Primary Outcome: Same as current

Current Secondary Outcome: Develop a Disability Severity Index including items with high patient-physician concordance [ Time Frame: 1 year ]

Original Secondary Outcome: Same as current

Information By: University of Iowa

Dates:
Date Received: October 17, 2011
Date Started: June 2011
Date Completion:
Last Updated: March 25, 2014
Last Verified: March 2014