Rett Syndrome
Conditions
Keywords
habilitation, recovery of function, purposeful arm use, gaming
Brief summary
This study focuses on improving purposeful arm use while simultaneously reducing engagement in stereotypies. It is typically expected that the training period for this study will last about 6 months. The first half of the training periods will be devoted to learning to separate hands to stop the stereotypies that interfere with arm and hand use. In this first half, participants will also need to learn to keep arms apart in order to be actively involved in the chosen game. The second half of the training period will be devoted to learning to stop stereotypies and reach for targets that are intended to start game play. When not touching the targets, the software will interpret that the game should stop and wait for the next target to be touched.
Detailed description
Baseline measurements taken at start of study. Training occurs for separation tasks for the first 13 weeks, with four 15-min sessions running per week. To gradually improve in ability to control gaming with arms/hands, each participant has the option of trying 13 levels or challenges on the extent of separation (how far apart hands can be taken.) Training occurs for the final 13 weeks for reaching tasks. Here, the participant must separate hands and reach for a defined target in order to initiate game play. These sessions will also last 15 minutes each and four sessions will be required per week. At the conclusion of the 26 weeks of training, the measurements of functional arm/hand use, and other behavioral measurements taken at Baseline will be repeated and compared to Baseline to assist in determining the success of the gaming used to train purposeful and functional arm use.
Interventions
BEHAVIORALcomputer gaming
Investigators will personalize gaming sessions based on the motivators and interests of each participant. During each intervention session, the participant will be encouraged to initiate voluntary hand separations in order to activate or control the gaming activity.
Sponsors
Georgetown University
Fraunhofer Heinrich Hertz Institut (HHI)
Max-Planck-Institute for Cognition
Charite University, Berlin, Germany
Rett Syndrome of Germany
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
TREATMENT
Masking
NONE
Intervention model description
Customized gaming system used to improve purposeful arm use. Games are personalized based on what is motivating to the participant, so each session is personalizable. A variety of games will be available for the participant's choosing. The image or video game that the participant selected will then be projected onto the surface of a table and webcams directed at their body and programmed to detect the participant's movements will serve as the means to record what the participant is doing. Participants are typically engaged in stereotypies; such posturing will be counted as a STOP signal. As participants move their hands apart from each other or otherwise stop their unique stereotypy, the separation or reaching movements will be translated into key strokes that guide the games the participants are playing. The game play for each sessoin lasts for 15 minutes. The aim is to play at least 4 of these sessions over 7 days.
Eligibility
Sex/Gender
FEMALE
Age
4 Years to 65 Years
Healthy volunteers
No
Inclusion criteria
* dx of Rett syndrome * functional range of motion of both arms * no seizures or seizures managed with medication * understanding cause and effect * midline stereotypies
Exclusion criteria
* no competing orthopedic or neuromuscular diagnosis that impacts shoulder movements
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Counts and timing of obligatory stereotypies | 60 min functional assessment periods: one just before start of intervention (baseline) and one at the end of intervention (post-intervention testing) Weekly data collection from intervention sessions: enrollment to end of intervention 26 weeks later. | We will collect two variables: the number of times the participant engages in her unique stereotypy and the length of time (in seconds) that the stereotypy occurs. Data will be collected from both weekly intervention sessions and the two functional assessments. Functional data will be collected from the movements made by the individual as well as from BEFORE and AFTER questionnaires to be completed by the caregivers of the participant. |
| Timing and number of separations (ceasing stereotypies) | Two 60 minute assessment periods: one just before start of intervention (baseline) and one at the end of intervention (post-intervention testing). Data from intervention sessions will run from enrollment to end of intervention 26 weeks later. | Data will be collected from intervention sessions and the two functional assessments. Data will be in both the number of times each girls separates hands (counts) and timing (in seconds) to record how long hands remained apart. Functional data will be collected from the movements made by the individual as well as from BEFORE and AFTER questionnaires to be completed by the caregivers of the participant. |
| Reaching data for number of reaches and amount of time reaching occurs | Two 60-minute assessment periods: one at baseline and one post final intervention session. Data from weekly intervention will be gathered from enrollment to 26 weeks later when intervention is complete. | Data will be collected from intervention sessions and the two functional reach assessments. Counts of the number of purposeful reaches and the extent of time (measured in seconds) the reach is maintained. Functional data will be collected from the movements made by the individual as well as from BEFORE and AFTER questionnaires to be completed by the caregivers of the participant. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORPamela Diener, PhD,MS,OT/L
Georgetown University
Outcome results
None listed