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Active, Not Recruiting

NCT Number: NCT07418905

Technology-supported Motor Rehabilitation for People With Rett Syndrome

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.

Active, Not Recruiting

This study is active but is not currently recruiting participants.

Key information

Conditions

Rett Syndrome Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Genetic Diseases, X-Linked Heredodegenerative Disorders, Nervous System Intellectual Disability Nervous System Diseases Neurobehavioral Manifestations Neurologic Manifestations X-Linked Intellectual Disability

Age range

4 year–65 year

Sex eligibility

Female

Study type

Interventional

Phase

Not applicable

Primary location

Georgetown University School of Medicine

Bethesda, Maryland, 20814, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

computer gaming

Behavioral

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.

Primary outcomes

  1. Counts and timing of obligatory stereotypies

    Time frame: 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.

  2. Timing and number of separations (ceasing stereotypies)

    Time frame: 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.

  3. Reaching data for number of reaches and amount of time reaching occurs

    Time frame: 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.

Sponsors and collaborators

Lead sponsor

Georgetown University

Other

Collaborators

  • Charite University, Berlin, Germany
  • Fraunhofer Heinrich Hertz Institut (HHI)
  • Max-Planck-Institute for Cognition
  • Rett Syndrome of Germany

Registry information

Official study title

Technology-supported Motor Rehabilitation for People With Rett Syndrome (TeMoRett) Sub-project: Psychophysiological Personalization of the Technology-supported Motor Rehabilitation for People With Rett Syndrome

Acronym: TeMoRett

Important dates

Study start
2024
Primary completion
2026
Study completion
2026
First posted
Feb 18, 2026
Registry last updated
Feb 20, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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