CMT1A is best known for causing nerve damage, sensory changes and muscle weakness in the hands, feet, arms and legs that gets worse over time. Emerging research suggests CMT1A may also affect balance and hearing through changes to the nerves in the ear. We would like all people with CMT1A to complete this survey, whether they feel they have a difficulty with their balance and hearing or not.

Some people report difficulty hearing in noisy environments despite having “normal” hearing test results. Understanding the lived experience of people with CMT is important to determine whether hearing-related concerns are present in the CMT1A population. Even subtle hearing difficulties can impact communication, social participation, confidence, and quality of life.

CMTA-STAR is currently funding hearing loss and balance research in CMT1A, and patient participation in this survey will help researchers better understand the lived experience, guide future research efforts, and potentially support the development of new outcome measures for clinical trials.

About this CMTA-STAR Funded Study

The aim of this survey is to understand the lived experience of individuals with CMT1A in relation to their balance and hearing.

This study combines two elements:

1. An online survey to capture the lived experience of individuals with CMT1A in relation to their balance and hearing (open to all with CMT1A living anywhere in the world through the link below)
2. In-person advanced tests to determine how often hearing and balance issues occur in CMT1A and how they relate to disease severity (open to those in Michigan, USA and surrounding area with CMT1A by invitation from the study lead) .

How to Get Involved

1. Online Survey (Adults and Children):

• Participants will complete a questionnaire about hearing, communication in daily life, and balance confidence.

2. In-Person Hearing Evaluation (Adults ages 18–50):

• A subset of participants will be invited for two days of advanced hearing testing at the University of Michigan. Testing includes standard hearing exams, speech-in-noise tasks, sound localization, and non-invasive recordings of auditory nerve and brain responses. Travel support and compensation are provided.
• If you or a family member may be eligible and are interested in participating in-person, or would like more information, please contact the study team and reference “CMTA Patients as Partners in Research.”
  • Email: mccaslin@med.umich.edu
  • Phone: Available upon inquiry
• Please Note: Completing the online survey does not commit you to take part in the in-person evaluation element of the study, even if invited. Completing the online survey does not guarantee selection for the in-person evaluation element of the study. 

Who Can Participate?

• This study is open to individuals with a genetically confirmed Charcot-Marie-Tooth type 1A (CMT1A) diagnosis.
  • Other CMT types or variants of uncertain significance (VUS) are not eligible for this study.

• Adults and children for the survey (see above)
  • Parents/caregivers can help younger children to complete the survey if needed
• Adults ages 18–50 for in-person testing (see above)
• All genders and backgrounds are welcome
• This survey is provided in English, participants must be able to read and respond in English