Development and Validation of a Disability Severity Index for CMT

Completed

Conditions studied: Charcot Marie Tooth Disease

In brief

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.

Key facts

Study ID

NCT01455623

Run by

University of Iowa

People needed

291

Starts

2011-06-01

Expected to finish

2014-03-01

Last updated by the study team

2014-03-26

Who can join

Age: 8 and older. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• patients with CMT ages 8-100,
• health care professionals who take care of patients with CMT.
• Eligible patients will be patients that have joined the INC RDCRN Contact Registry. These will be patients or guardians with known or probable inherited neuropathies.
• Eligible health care professionals who participate in the care of patients with inherited neuropathies (physicians, genetic counselors, physical and occupational therapists etc.) attending the 4th International CMT Consortium to be held in Potomac Maryland June 29-July 1, 2011.

You may not qualify if…

• Does not read or speak English.

Where it is running

• University of Iowa — Iowa City, Iowa, United States

Full record on ClinicalTrials.gov

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