Current Research Studies

By participating in research studies, you are contributing to the knowledge of how Angelman syndrome is treated now and in the future. Participating in research gives you a chance to step up and take action.

Each research study has different requirements for participation and goals of the study. Some studies can be completed at home via surveys or with zoom sessions and others require visits to a physical location. It is important to find a study that is right for your individual with AS and your family.

See the list of active research studies below. Click to find out details about each and how to participate.

Clinical Trials If you are interested in Clinical Trials in Angelman syndrome, see the Clinical Trials page.

STAY INFORMED

The ASF informs families about new opportunities to participate in research through our e-newsletter. Complete the Contact Registry to be added to the email list, or sign up for emails on our website.

Angelman Syndrome Natural History Study

Overview Participation in this study will help better our understanding of how development, behavior and communication change in individuals with AS over the course of their lives. We may know a lot about AS, but there are certain ages and issues that have […]

Brain Imaging Study

UNC School of Medicine is conducting a Brain Imaging Study Children from 0 to 24 months of age The goal of the study is to identify the earliest brain and behavioral symptoms of AS, to enable the possibility of detecting […]

CVI in Angelman syndrome

Karen Erickson, PhD, at UNC Chapel Hill, is studying the Prevalence of Cortical Visual Impairment (CVI) in Angelman syndrome and it’s effect on communication. The purpose of this research study is to estimate the prevalence of cortical visual impairment among […]

Extraction of Neuronal Stem Cells from Dental Pulp for Human Neurogenetic Disease Studies

Dr. Lawrence T. Reiter at the University of Tennessee Health Science Center in Memphis, TN is conducting a research study to determine if neurons can be grown from the dental pulp of individuals with various neurogenetic syndromes including chromosomal duplications […]

Fathers Perception of Support

If you are the father of a child with Angelman syndrome, you are invited to participate in a research study. The goal of this study is to better understand how fathers of a child with a genetic condition perceive support […]

Gut Microbiome in AS

A study at Purdue University will look at gut function in Angelman syndrome and its relationship to behaviors and diet. Gastrointestinal or stomach issues are common in Angelman syndrome however, the reasons are not known. Researchers will compare gut function […]

Movement Disorders in Angelman Syndrome

The goal of this study is to better understand the abnormal movements that are particularly troubling to people with Angelman syndrome, what treatment has worked and what has not worked. For those whose movements remain troublesome, caregivers will be asked […]

PANDAbox: Early Development in Angelman Syndrome

Telehealth Study on Early Development in Angelman Syndrome at Purdue University The Purdue University Neurodevelopmental Family Lab is recruiting families of children with Angelman syndrome 24 months old and under. This study aims to improve understanding of how children with […]

Project Wellcast

This NIH-funded research study aims to understand how to best support caregivers of children with rare neurogenetic conditions via telehealth. Eligible participants may receive free resources, evidence-based treatments by trained therapists, and/or peer-to-peer coaching by other rare disorder caregivers. Participation […]

Understanding and Enhancing the Medical Experience

A team of researchers at University of California, Los Angeles are conducting research to better understand the experiences of patients and their families with Angelman syndrome when interacting with the medical system. The goal of this research is to develop […]

Vision and Communication Survey

A team of researchers at UNC are investigating the prevelance of cortical visual impairment (CVI) in people with Angelman syndrome. The goal of the study is to estimate how many people with AS have CVI, assess the severity and determine whether […]

Help Find New Treatments For Angelman Syndrome

Current Research Studies

STAY INFORMED