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Psychosocial Support for Rett Syndrome Caregivers

This study is adapting a support program called "Caregiver Speaks" for parents and caregivers of individuals with Rett syndrome. Rett syndrome is a rare, complex neurological disorder that requires intensive care, which can be very challenging for families. The program, delivered online through a private social media platform, aims to provide psychological support to these caregivers. Participants in this study will be receiving Daybue (trofinetide) as part of their routine medical care, but the study itself does not manage this medication. Researchers want to see if this adapted support program is practical to use and helpful for caregivers, specifically looking at its impact on their psychological well-being. The study plans to enroll 60 participants and is currently unclear regarding its recruitment status. You can join if you are an adult caregiver (18 years or older) of someone with a confirmed diagnosis of Rett syndrome, can speak English, and are willing to participate in a 6-week online program.

Study design
This is an interventional study with a planned enrollment of 60 participants. It is not specified if it is randomized or blinded.
What's involved
You would participate in a 6-week online psychosocial intervention delivered via a private social media platform.
Compensation
Not stated in the trial record.
Follow-up
The primary outcome is measured immediately after the 6-week intervention.

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NCT07730112

Adapting a Psychosocial Support Intervention for the Rett Syndrome Community

Not Yet Recruiting
NAAges 18+InterventionalSupportive care
Colorado State University
~60 participants
Updated 2026-07-28 on ClinicalTrials.gov
What's tested:Those who have patients prescribed DaybueCaregiver Speaks + Daybue

At a glance

Recruiting sites
0 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Feasibility of Intervention Measure (FIM)
Measured over Immediately post-intervention (6 weeks)

Conditions

Rett Syndrome
Family Caregivers
Social Support
Psychological Support

Explore related trials

Rett Syndrome

Where it's being run

1 sites across 1 states
Colorado1

Who to contact

Abigail Rolbiecki, PhD, MPH, MSW
[email protected]
970-491-6204
Email the study team

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Eligibility criteria

Inclusion

Adult caregiver (≥18 years old) of an individual with Rett syndrome Caregiver of a child or individual of any age with a confirmed clinical diagnosis of Rett syndrome.
English-speaking and able to read and understand study materials Willing and able to participate in a 6-week, online psychosocial intervention delivered via a private social media platform
Willing and able to complete electronic surveys and, if selected, participate in virtual interviews
For randomized phase participation: child is receiving standard pharmacologic treatment for Rett syndrome (e.g., Daybue) as part of routine clinical care

Exclusion

Inability to speak, read, or understand English sufficiently to participate in the intervention and assessments.
Caregiver under the age of 18 years
Lack of confirmed diagnosis of Rett syndrome in the care recipient.
Inability or unwillingness to provide informed consent.
Lack of access to required technology (internet-enabled device and ability to access the online intervention platform).

What this trial measures

  • Feasibility of Intervention Measure (FIM)Immediately post-intervention (6 weeks)

    Feasibility of the Caregiver Speaks-RTT intervention assessed by caregiver recruitment, retention, session participation, and completeness of outcome data. Feasibility benchmarks include ≥80% intervention engagement, ≥80% retention through completion, and \<20% missing baseline or post-intervention data, measured using the Feasibility of Intervention Measure (FIM) and participation metrics. 1 to 5 (average score across 4 items; alternatively 4 to 20 if summed).