[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100649187":3},{"organization":4,"armGroups":7,"interventions":20,"overallOfficials":25,"centralContacts":30,"locations":39,"responsibleParty":54,"collaborators":56,"id":61,"slug":62,"hasResults":63,"nctId":64,"briefTitle":65,"officialTitle":65,"acronym":25,"eligibilityCriteria":66,"healthyVolunteers":63,"sex":67,"minAge":68,"maxAge":25,"enrollmentInfo":69,"targetDuration":25,"studyType":72,"phases":73,"briefSummary":75,"conditions":76,"keywords":81,"overallStatus":84,"whyStopped":25,"lastUpdateSubmitDate":85,"lastUpdatePostDateStruct":86,"startDateStruct":89,"completionDateStruct":91,"leadSponsor":93,"locationsCount":94},{"fullName":5,"class":6},"Colorado State University","OTHER",[8,14],{"label":9,"type":10,"description":11,"interventionNames":12},"Pharmacologic Treatment Only","ACTIVE_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).",[13],"Other: Those who have patients prescribed Daybue",{"label":15,"type":16,"description":17,"interventionNames":18},"Pharmacologic Treatment Plus Caregiver Speaks-RTT","EXPERIMENTAL","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.",[13,19],"Other: Caregiver Speaks + Daybue",[21,26],{"type":6,"name":22,"description":23,"armGroupLabels":24,"otherNames":25},"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.",[9,15],null,{"type":6,"name":27,"description":28,"armGroupLabels":29,"otherNames":25},"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.",[15],[31,36],{"name":32,"role":33,"phone":34,"phoneExt":25,"email":35},"Abigail Rolbiecki, PhD, MPH, MSW","CONTACT","970-491-6204","abigail.rolbiecki@colostate.edu",{"name":37,"role":33,"phone":38,"phoneExt":25,"email":25},"Talia Thompson, PhD","303-871-3736",[40],{"facility":5,"status":25,"city":41,"state":42,"zip":43,"country":44,"countryCode":45,"cosmosGeoPoint":46,"geoPoint":51,"contacts":52},"Fort Collins","Colorado","80523","United States","US",{"type":47,"coordinates":48},"Point",[49,50],-105.08442,40.58526,{"lat":50,"lon":49},[53],{"name":32,"role":33,"phone":34,"phoneExt":25,"email":35},{"type":55,"investigatorFullName":25,"investigatorTitle":25,"investigatorAffiliation":25,"oldNameTitle":25,"oldOrganization":25},"SPONSOR",[57,59],{"name":58,"class":6},"University of Denver",{"name":60,"class":6},"Children's Hospital Colorado","100649187","adapting-a-psychosocial-support-intervention-for-the-rett-syndrome-community-100649187",false,"NCT07730112","Adapting a Psychosocial Support Intervention for the Rett Syndrome Community","Inclusion Criteria:\n\n* 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.\n* 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\n* Willing and able to complete electronic surveys and, if selected, participate in virtual interviews\n* For randomized phase participation: child is receiving standard pharmacologic treatment for Rett syndrome (e.g., Daybue) as part of routine clinical care\n\nExclusion Criteria:\n\n* Inability to speak, read, or understand English sufficiently to participate in the intervention and assessments.\n* Caregiver under the age of 18 years\n* Lack of confirmed diagnosis of Rett syndrome in the care recipient.\n* Inability or unwillingness to provide informed consent.\n* Lack of access to required technology (internet-enabled device and ability to access the online intervention platform).","ALL","18 Years",{"count":70,"type":71},60,"ESTIMATED","INTERVENTIONAL",[74],"NA","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.",[77,78,79,80],"Rett Syndrome","Family Caregivers","Social Support","Psychological Support",[78,77,82,83],"Online Support Group","Meaning-making","NOT_YET_RECRUITING","2026-07-22",{"date":87,"type":88},"2026-07-28","ACTUAL",{"date":90,"type":71},"2026-08-01",{"date":92,"type":71},"2028-05-31",{"name":5,"class":6},1]