There are 2 check-ins to this pilot study. This first check-in should take you about 20-25 minutes to complete.
- You will answer the overall neuropathy limitation score (ONLS) survey.
- You will capture many videos of various activities or movements of your arms, hands, legs, feet and entire body.
- You will have the option to be the first to take the newly validated pediatric cmt quality of life (PCMT-qol) survey.
- If you meet the criteria (over 8 years old, can walk and have an iPhone with 2 or more camera lenses), you will give us your mailing address for a pilot packet to be sent to you. Limit one pilot packet per mailing address. If you do not match, you can order these supplies here and complete the CMT Medical Journal.
You will need some supplies to complete this visit. most items can be found around the house and are needed to complete the first of your two check-ins.
This is what you need for this medical journey:
- A CaptureProof account - Sign up here
- A mobile phone with a camera
- A well lit, open area where you can walk/run 8-10 steps
- A helper willing to take videos of you
- A hair brush
- Lock and key
- A set of cutlery
- Something with buttons and something with a zipper
- A t-shirt or sweater
- Access to stairs
- Something to tie your hair back if it sits on your shoulders
- Any aids that you typically use can be a part of this check-in
- AFOs (If you have these)