Adapting a Group Intervention for Emotion Dysregulation in Prader-Willi Syndrome
The goal of this study is to help teens with Prader-Willi Syndrome (PWS) and their families learn practical strategies for managing issues like irritability, meltdowns, and anxiety. The main objective of the study is: To adapt current Regulating Together materials to create an outpatient group program for emotion dysregulation in Prader-Willi Syndrome (PWS) that will improve psychosocial outcomes for youth with PWS.
• Ages 13-17.5 years
• Confirmed genetic diagnosis of Prader-Willi Syndrome
• Fluent in spoken English
• Adolescent's use of flexible phrase speech or greater
• Meeting clinically significant emotional dysregulation criteria
• Willing to participate in weekly 90-minute group sessions
• Family is willing to keep prescribed psychiatric medication and outside behavioral interventions stable
• Parent, guardian, or legally authorized representative must provide written permission on behalf of the participant
• Age ≥ 18 years
• Lives and cares for their child with PWS for \> 50% of the year
• Fluent in spoken English
• Willing to participate in twice weekly 90-minute sessions, including one virtual session weekly