Education and Training
Development and Validation of a Disability Severity Index for CMT
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.
Stanford is currently accepting patients for this trial.
Eligibility
Inclusion Criteria:
- 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.
Exclusion Criteria:
- Does not read or speak English.
Ages Eligible for Study
8 Years - N/A
Genders Eligible for Study
All
Now accepting new patients
Contact Information
Stanford University
School of Medicine
300 Pasteur Drive
Stanford,
CA
94305
Shirley Paulose
650-724-3792
I'm interested