Trial Search Results

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.

Lead Sponsor:

University of Iowa

Collaborator: Muscular Dystrophy Association

Stanford Investigator(s):

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
Recruiting