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NCT07730112

Overview

NCT ID: NCT07730112
Lead Sponsor: Colorado State UniversityOTHER
Official Title: Adapting a Psychosocial Support Intervention for the Rett Syndrome Community
Brief 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.
Conditions: Rett Syndrome
Family Caregivers
Social Support
Psychological Support
Interventions

Status and Timeline

Status: Not yet recruiting
Last Update Posted: Jul 28, 2026Actual
Start Date: Aug 1, 2026Estimated
Primary Completion Date: May 31, 2028Estimated
Completion Date

Participation Criteria

Ages Eligible for Study: Adult (18-64)Older Adult (65+)
Sexes Eligible for Study: All
Accepts Healthy Volunteers?: No
Eligibility Criteria: Inclusion Criteria:

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 Criteria:

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).

Study Plan

Study Type: Interventional
Phase: Not Applicable
Enrollment: 60Estimated
Primary Purpose: Supportive Care
Allocation: Randomized
Interventional Model: Parallel Assignment
Masking: None (Open Label)

Contacts and Locations

Central Contacts: Abigail Rolbiecki, PhD, MPH, MSWContact
abigail.rolbiecki@colostate.edu

Similar Studies

Participant Group/Arms

Pharmacologic Treatment OnlyActive Comparator

Participants in this arm will receive standard pharmacologic treatment for Rett syndrome (e.g., Daybue) as prescribed by their clinical care team. Participants in this arm will not receive the Caregiver Speaks-RTT psychosocial intervention during the randomized study period but will be offered the opportunity to participate in the Caregiver Speaks-RTT intervention after completion of study follow-up assessments (wait-list control).

Other: Those who have patients prescribed Daybue

Pharmacologic Treatment Plus Caregiver Speaks-RTTExperimental

Participants in this arm will receive standard pharmacologic treatment for Rett syndrome (e.g., Daybue) in combination with the Caregiver Speaks-RTT psychosocial intervention, a 6-week, moderated, online, meaning-centered storytelling program designed to support caregiver wellbeing.

Other: Those who have patients prescribed Daybue