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NOT YET RECRUITING
NCT07730112
NA

Adapting a Psychosocial Support Intervention for the Rett Syndrome Community

Sponsor: Colorado State University

View on ClinicalTrials.gov

Summary

This study seeks to adapt Caregiver Speaks, a psychosocial supportive intervention delivered through Facebook, for parent caregivers of children living with Rett Syndrome. This study also seeks to explore feasibility and acceptability of implementing the adapted intervention, and its impact on parent psychological outcomes.

Key Details

Gender

All

Age Range

18 Years - Any

Study Type

INTERVENTIONAL

Enrollment

60

Start Date

2026-08-01

Completion Date

2028-05-31

Last Updated

2026-07-28

Healthy Volunteers

No

Interventions

OTHER

Those who have patients prescribed Daybue

Participants must be receiving Daybue (trofinetide) as prescribed and managed by their treating clinician as part of routine clinical care. The study does not assign, initiate, modify, or manage pharmacologic treatment. Participants are required to continue taking Daybue according to their physician's prescription during the study period. Medication dosing, monitoring, and clinical decision-making remain entirely under the care of the participant's healthcare provider.

OTHER

Caregiver Speaks + Daybue

Participants receive standard pharmacologic treatment for Rett syndrome (e.g., Daybue \[trofinetide\]) as prescribed and managed by their clinical care team. Medication use follows routine clinical practice, including dosing, monitoring, and management of side effects. No experimental medication dosing or alteration is required as part of this study. Pharmacologic treatment is provided either alone or in combination with the Caregiver Speaks-RTT psychosocial intervention, depending on randomized group assignment.

Locations (1)

Colorado State University

Fort Collins, Colorado, United States