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URMC / Center for Health + Technology / Our Expertise / CHeT Outcomes / CMT-HI: The Charcot Marie Tooth Health Index

 

CMT-HI: The Charcot Marie Tooth Health Index

  • Type of Clinical Outcome Assessment (COA): Patient-reported outcome measure (PRO)
  • Administration Mode: Self-administered
  • Therapeutic Area: Charcot Marie Tooth
  • Approximate Completion Time: <11 minutes
  • Required Supervision: None
  • Recall Period: Immediate point in time

Instrument Variations

  • The Charcot Marie Tooth Health Index Short Form (CMT-HI-SF)
    • CMT-HI Short Form Completion Time: Under 1 minute

Symptom Subscales

  • Number of Independently Validated Symptom Subscales: 18

Mobility; Foot & Ankle Strength; Balance; Activity Participation; Hand & Finger Strength; Shoulder & Arm Strength; Sensation; Pain; Fatigue; Sleep; Emotional Health; Social Performance; Cognition; Heartburn; Constipation; Hearing; Breathing; Swallowing Function

Instrument Attributes

  • The CMT-HI is a patient-reported outcome (PRO) measure designed to assess symptoms and health-related quality-of-life from the perspective of patients with charcot marie tooth.
  • Designed and validated to fully satisfy regulatory and published FDA guidance for use in drug-labeling claims and measuring changes in how a patient feels and functions.
  • The CMT-HI is a fully valid, reliable, responsive, and disease-specific instrument capable of measuring changes in patient-reported health in patients with charcot marie tooth.
  • The instrument was developed using extensive patient input, including an analysis of 656 patient quotes and a large cross-sectional study involving 407 patients.
  • The CMT-HI is highly relevant to patients, has low patient burden, correlates with markers of disease severity, and demonstrates low floor and no ceiling effects.
  • English
  • Danish
  • Dutch (BE)
  • Dutch (NE)
  • French (FR)
  • French (BE)
  • German (BE)
  • Italian
  • Spanish (Spain)

Additional translations available upon request.

  • Johnson, NE, Heatwole CR, Ferguson M, Sowden, JE, Jeanat S, Herrmann. Patient Identification of the Symptomatic Impact of Charcot Marie Tooth Disease Type 1A. Journal of Clinical Neuromuscular Disease. 2013 Sep; 15(1):19-23
  • Johnson NE, Heatwole C, Creigh P, McDermott MP, Dilek N, Hung M, Bounsanga J, Tang W, Shy ME, Herrmann DN. The Charcot-Marie-Tooth Health Index: Evaluation of a Patient-Reported Outcome. Ann Neurol. 2018 Aug;84(2):225-233
  • Johnson, NE, Heatwole CR, Dilek N, Sowden J, Kirk CA, Shereff D, Shy ME, Herrmann DN. Quality of life in Charcot Marie Tooth Disease: The patient’s perspective. Neuromuscular Disorders. 2014 Nov;24(11):1018-23
  • Pisciotta C, Ciafaloni E, Zuccarino R, Calabrese D, Saveri P, Fenu S, Tramacere I, Genovese F, Dilek N, Johnson N, Heatwole C, Herrmann D, Pareyson D. Validation of the Italian version of the Charcot-Marie-Tooth Health Index (CMT-HI). Journal of the Peripheral Nervous System.
  • T. Rehbein,  J. Purks,  N. Dilek,  S. Behrens-Spraggins,  J. E. Sowden,  K. J. Eichinger,  the ACT-CMT Study Group ,  J. Burns,  D. Pareyson,  S. S. Scherer,  M. M. Reilly,  M. E. Shy,  M. P. McDermott,  C. R. Heatwole,  D. N. Herrmann. Patient-reported disease burden in the Accelerate Clinical Trials in Charcot–Marie–Tooth Disease Study. J Peripher Nerv Syst. 2024; 1-7. doi:10.1111/jns.12662.
  • “Symptomatic Impact of Charcot Marie Tooth Disease.” N Johnson, C Heatwole, J Sowden, N Dilek, D Herrmann.  The Muscle Study Group.  Oxford, UK. 9/13. Muscle and Nerve. September 2013 48:S1. S1.

Instrument Scoring

All subscales are scored on a scale of 0 to 100 with 0 representing no disease burden and 100 representing the maximum level of disease burden. Symptom questions within each subscale are weighted based on participant-reported prevalence and average impact as identified through the cross-sectional study. Subscale scores are also weighted to generate a total CMT-HI score (0-100) representing overall disease burden.

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