Development and Validation of a Disability Severity Index for CMT

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Trial ID: NCT01455623

Age - 8 Years-N/A Condition - Charcot-Marie-Tooth Disease Gender - All Accepting Healthy Volunteers - yes

Purpose

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.

Official Title

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

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.

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Recruiting

I'm Interested

Contact Information

Stanford University
School of Medicine
300 Pasteur Drive
Stanford, CA 94305
Shirley Paulose
650-724-3792

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