Study to Understand the Long-Term Course of Angelman Syndrome in Children and Adults

What this Trial Is About

Researchers are conducting a prospective, longitudinal natural history study to better understand Angelman syndrome in children and adults. The study aims to collect detailed data through both investigator observations and reports from parents. This information will help establish Angelman syndrome-specific norms for outcome measures, supporting the design of future clinical trials and improving care for those affected by the condition. This observational study does not involve any treatments or interventions. Instead, participants will be followed over time to gather information about their medical history and development. The study collects data through various assessments including the Vineland Adaptive Behavior Scales, Bayley Scales of Infant and Toddler Development, and the Observer-Reported Communication Ability Measure, conducted over an average period of one year. Participants will be involved in regular evaluations that include medical history reviews and developmental assessments. These assessments provide valuable information on communication abilities and adaptive behaviors. The study is sponsored by Boston Childrens Hospital and will continue through April 2031. The collected data aims to support future research and enhance understanding of Angelman syndromes progression and care needs.

Angelman Syndrome Natural History Study