Current Research Projects

CHARGE Syndrome

Up to 10 families are asked to participate in this pilot study.

Project Description

Compensation

Application

Informed Consent

 
 

Brief Overview

The project:

1. Participants will be sent a custom-made belt for the child to wear. The belt will have a step-counter.

   a. We will ask for child's daily step count

   b. During weekly meetings we will ask you questions about your child's walking, concepts, language and social skill activities.

   c. Families will be asked to submit approximately five to seven minutes of smart phone videos of their children engaged in those walking and play activities.

2. The two cane frames will be sent. You are being asked to have the child wear a cane frame most of the day.

   a. We will ask for child's daily step count

   b. During weekly meetings will will ask you questions about your child's walking, concepts, language and social skill activities.

   c. Families will be asked to submit approximately five to seven minutes of smart phone videos of their children engaged in those walking and play activities.

Payment:

1. A custom-made pediatric belt cane (value $625)

2. $200 cash honorarium for providing data: $25 after first month, $75 after the second month, and $100 after the third month of data sharing.

Voluntary participation:

  • Participation in this research study is entirely voluntary. If you decide not to participate, there will be no penalty to you, and you will not lose any benefits to which you are otherwise entitled.

 

  • Everyone can decide to withdraw consent and stop participating in the research at any time, without any penalty.

 

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