Help advance Angelman Syndrome research by having your family or your individual with AS participate in research studies.
See the list of active studies below to find out if there is a study that is right for you and your family.
Angelman Syndrome Natural History Study
Offsite Visits in Hollywood, FL on December 4 and 5, following the 2022 FAST Science Summit! Follow-up visits and new participants are welcome! What you can expect from a study visit: • During your in-person visit at the conference or […]
Read moreAugmentative and Alternative Immersion
Overview The purpose of this study is to evaluate the impact of communication partner coaching in Augmentative and Alternative Communication (AAC) intervention. The primary goal of the study is to evaluate the impact of the Model, Encourage, Respond (MODELER) AAC […]
Read moreBrain Imaging Study
UNC School of Medicine is conducting multiple Brain Imaging Studies 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 early […]
Read moreCaregiver Survey on Symptoms
Clinical Outcomes Solutions (COS) is a healthcare research company that specializes in research about the impact of illnesses on people’s lives. COS is conducting a study on symptoms the person you care for experiences and get feedback on a questionnaire […]
Read moreClinical Trial: HALOS
The HALOS clinical trial, sponsored by Ionis Pharmaceuticals is now open. This is a study of the safety and tolerability of ION582 in individuals with Angelman syndrome. ION582 is an investigational antisense medicine designed to increase production of UBE3A protein. […]
Read moreClinical Trial: KIK-AS
The KIK-AS clinical trial, sponsored by GeneTX Biotherapeutics and Ultragenyx Pharmaceutical is now open. This is a study of the safety and tolerability of GTX-102 in children with Angelman syndrome. Watch a webinar about the KIK-AS trial. Participant Requirements Below […]
Read moreClinical Trial: Tangelo
The Tangleo clinical trial, sponsored by Hoffman La Roche is now open. This is a study of the safety and tolerability of RO7248824 in children with Angelman syndrome. Participant Requirements Below is a preliminary list of inclusion criteria: Inclusion […]
Read moreCommunication and Motor Skills
A study being conducted at University of Connecticut is studying the social communication and motor skills in Angelman syndrome. Participation Complete an online survey about your individual’s social and communication style. The survey will take 40 – 60 minutes. You’ll […]
Read moreExtraction 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 […]
Read moreFathers 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 […]
Read moreGut 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 […]
Read moreHarvard Music Study
Researchers at Harvard are studying how people with AS respond to and participate in musical activities, and how parents interact musically with their children. In the study, the researchers will play your child a series of recorded songs and poems […]
Read moreMovement 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 […]
Read morePANDAbox: 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 […]
Read moreResearch Interview about AS
Overview This is a non-medication research interview study seeking information about symptoms and effects on daily life that children with Angelman Syndrome experience, from the caregiver’s perspective. Information from these interviews will be used to better understand how to assess […]
Read moreSleep Survey
A team of researchers in the School of Health Sciences at University of Canterbury, New Zealand, are investigating sleep problems in people with Angelman syndrome. The goal of the study is to help researchers understand parents’ perceptions of the nature […]
Read moreTele-SPARC Study
The Supporting Parent-Adolescent Relationships and Communication (SPARC) Project is being conducted at Notre Dame University in Fort Wayne, IN. The study aims to find the best way to support families with children with intellectual or developmental disabilities through communication to improve […]
Read moreVideo Capture Study
Casimir, a clinical research organization and Boston Children’s Hospital are in the process of developing an at-home assessment for potential use in clinical trials that would capture patients with Angelman syndrome in their everyday environment. Casimir is currently seeking participants […]
Read moreVision 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 […]
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