Assessing Customized Computer Activities to Reduce Hand Stereotypies and Improve Independent Arm Use in Rett Syndrome

What this Trial Is About

Researchers are investigating the impact of customized computer-based activities using a tele-research approach to help people with Rett syndrome. This condition leads to loss of purposeful hand use and repetitive hand movements. The study aims to see if engaging in modified virtual reality games can reduce these repetitive movements and increase independent arm and hand use, while also improving quality of life. The study allows participants from various countries and US states due to its virtual nature. Participants will engage in a tailored intervention involving computer games designed to encourage independent hand separations and arm movements that control the virtual activities. Caregivers collaborate to customize the games based on each participant's motivation and interests. The program lasts about 5 to 6 months, including a 4-week pre-intervention phase, a 1-week cause and effect training, a 12-week intervention phase with three weekly one-hour sessions, and a 4-week post-intervention phase. Participants wear brightly colored wristbands during sessions to track arm movements. Throughout the study, investigators assess changes in independent reaching ability and hand stereotypies at five time points using the Functional Reach Test. They also evaluate quality of life and daily living activities through goal setting with caregivers. Additional measures include the Goal Attainment Scale and Functional Range of Motion tests. The study involves regular remote monitoring and collaboration with caregivers to support participation and track progress.

Measuring Impact of Computer Gaming on Arm Use in Rett Syndrome