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
Initiation of new psychosocial intervention within 30 days prior to first day of treatment
Presence of physical aggression in the adolescent directed towards a peer outside the home that resulted in injury within 30 days prior to screening
Presence of comorbid major neuropsychiatric illness warranting other treatment approaches
Presence of any major sensory impairment that would limit participating in the material including blindness or uncorrected hearing loss
Children's Mercy Hospital Kansas City
Lead sponsor
Foundation for Prader-Willi Research
Collaborator