Patients as Partners

Disability and Wellbeing Study

Prior research has shown that people with visible physical disabilities, including CMT, regularly encounter unfair treatment due to their disability and that this can negatively impact their wellbeing and mental health. This study aims to better understand what could help people maintain their wellbeing when they experience unfair treatment. The overarching goal of this project is to use findings to help educate the public about what unfair treatment can look like and how they can better support the disability community.

About the Study

The aim of this study is to better understand how unfair treatment (e.g., ableism, discrimination) may impact the wellbeing of people with physical disabilities, including CMT. In addition, the researchers hope to identify what may help people maintain their wellbeing when they encounter unfair treatment. Please note that the researchers welcome your participation regardless of whether you have ever experienced unfair treatment due to your disability.

The principal investigators are Dr. Emily Willroth and Payton Rule. The study is being conducted through the Wellbeing and Emotion Across the Lifespan Lab (WELLab) at Washington University in St. Louis; however, all participation is completed online and no in-person visits are required.

Who Can Participate

We are looking for participants who are 18 years of age or older who:

Have a visible physical disability. We define visible physical disability broadly as a disability that other people may notice.
- i.e. Have or are suspected of having a type/subtype of CMT that has visible symptoms.
Have been genetically or clinically diagnosed with CMT, or are suspected of having CMT.
Are currently living in the United States.
Can read and understand English.

How to Get Involved

As a participant in this study, you would be asked to fill out one online survey per day for eight days (8 surveys total).

The first survey would take approximately 30 minutes while the other surveys would take approximately 5-10 minutes each (1.5 hours total).

If you think you or a family member might be eligible and interested in taking part in this research, or would like any further information, please click on the link below to complete a short (2-3 minute) survey to determine your eligibility. If you are eligible, you will be emailed additional information by the study team as well as the link to the first study survey.

PLEASE VISIT HERE for the eligibility survey: https://washu.qualtrics.com/jfe/form/SV_b118IDhTbytRp4i