Adapting a Psychosocial Support Intervention for the Rett Syndrome Community
Trial statusNot yet recruiting
Trial phaseNot applicable
Trial typeInterventional
Biological sexAll
Age18+
SponsorColorado State University
About this trial
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.
Eligibility criteria
Qualifiers
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
Disqualifiers
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.
Trial design
Treatments tested in this trial
- Those who have patients prescribed Daybue
- Caregiver Speaks + Daybue
Treatment groups
60 Participants
are divided into 2 treatment groupsSponsors and collaborators
Colorado State University
Lead sponsor
University of Denver
Collaborator
Children's Hospital Colorado
Collaborator
Source ClinicalTrials.gov