Group Behavioral Therapy for Prader-Willi Syndrome

(RT-PWS Trial)

This trial aims to assist teens with Prader-Willi Syndrome (PWS) and their families in managing issues like irritability, meltdowns, and anxiety through Regulating Together group therapy sessions. The goal is to enhance emotional regulation and overall psychosocial outcomes for these teens. Suitable participants are those aged 13 to 17.5 years, with a confirmed diagnosis of PWS, and who face significant emotional challenges. Participants will attend weekly group sessions with their caregivers to learn practical strategies for managing emotions.

As an unphased trial, this study provides a unique opportunity for families to acquire valuable skills and support in addressing PWS-related challenges.

No, you don't have to stop taking your current medications. The trial requires that you keep your prescribed psychiatric medication stable during the study.

Research has shown that the Regulating Together group therapy is generally easy for participants to handle. In past studies, this therapy helped children and teens on the autism spectrum manage their emotions and experience fewer meltdowns. Participants reported improvements in emotional control and adaptability after the treatment. Notably, a study with young people revealed that most participants remained in the program, indicating they found it manageable.

Unlike the standard treatments for Prader-Willi Syndrome, which often focus on managing symptoms through medications and nutritional support, Regulating Together is a group therapy specifically targeting emotion dysregulation. This therapy involves both teens with the syndrome and their caregivers, emphasizing a collaborative approach to emotional regulation. Researchers are excited about this treatment because it not only addresses the emotional and behavioral challenges directly but also empowers caregivers with strategies to support ongoing management, potentially leading to improved quality of life for both the teens and their families.

Research has shown that the Regulating Together group therapy, which participants in this trial will receive, can help manage emotional challenges in teens with Prader-Willi Syndrome (PWS). Earlier studies demonstrated improvements in areas like irritability, emotional control, and behavioral flexibility immediately after the therapy and even ten months later. Originally developed for autistic youth, this therapy has shown promise in reducing emotional difficulties. For instance, a related study found a 16% drop in hospitalizations for those with similar conditions. These results suggest that Regulating Together could assist teens with PWS and their families in better handling emotional issues.¹²³⁵⁶