Overview

The goal of this study is to characterize anxiety in individuals with AS. Anxiety is experienced by a significant percentage of those diagnosed with AS and can be associated with other behavior issues that can slow progress in treatment programs. Despite the high prevalence of anxiety in this population, little is known about how anxiety presents itself in individuals with AS. One reason that it may be difficult to assess anxiety in these patients is that they may not be capable of communicating their emotions due to impaired expressive language skills. This study will therefore aim to characterize anxiety in AS patients using formalized anxiety screening tools, including surveys that have been previously used with non-verbal or minimally verbal individuals.

Identifying the frequency and severity of anxiety symptoms present in individuals with AS will help in developing new treatments that target these symptoms.

   

Participation Requirements

  • Genetic diagnosis of AS
  • Study procedures can be completed in one visit lasting 2-3 hours or over multiple visits if more convenient
  • Visits will take place at either the Angelman Clinic at MGHfC or the Lurie Center for Autism.
  • Parents will answer open ended questions about their family member’s anxiety symptoms and the administration of standardized assessments evaluating anxiety. Additional assessments will be used to evaluate the presence of other behavioral symptoms such as aggression, hyperactivity, abnormal movements, and sleep.
  • There will be no costs associated with study procedures
  • Participants will be granted $50 at study completion as reimbursement for any other costs related to study participation.

       

More Information

For additional information about study requirements and procedures, please contact Dr. Christopher Keary’s research team at 781-860-1711 or LurieCenterResearch@partners.org.

The Angelman Syndrome Foundation does not endorse any clinical trial or study, but provides information to the AS community for its own consideration.