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 Cerebrospinal Fluid Study
The AS CSF Study sponsored by Biogen is designed to help learn more about AS and find potential biomarkers for use in AS clinical trials in the future. Biomarkers are substances, for example proteins, occurring in the body that […]
Read moreAngelman Syndrome Natural History Study
Angelman Syndrome Natural History Study in New Jersey Between September 17-19, 2021 appointments can be made at the Crowne Plaza Princeton in Princeton, NJ. If you live in the area or will be traveling to the area and have questions […]
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 moreBlack Caregivers Study
The Purdue University Neurodevelopmental Family Lab is recruiting Black parents and caregivers of children with Angelman syndrome under the age of 10 are invited to participate in a study of how families cope with stress caused by the COVID-19 pandemic. Participation To […]
Read moreBrain Imaging Study
University of North Carolina School of Medicine University of North Carolina (UNC) School of Medicine is conducting a longitudinal brain imaging study on boys and girls with Angelman syndrome who are deletion positive up to 5 years old. The goal of […]
Read moreCaregiver Communication Survey
Vanderbilt University is seeking primary caregivers of individuals who have complex communication needs. The goal of this study is to gather information on training received (if any), to support and enhance their child’s communication skills and be able to make […]
Read moreCaregiver Wellbeing Telehealth Study
The ASF is funding the Well-CAST (Well being for Caregivers of children With Angelman Syndrome through Telehealth) study being conducted at Purdue University. The goal is to determine how evidence-based interventions can be adapted to support caregivers of children with Angelman […]
Read moreCOA Measures in AS
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 the experience of children with AS and is looking to obtain feedback on […]
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 moreFREESIAS: Biomarkers Study
Webinars: Updates on FREESIAS and phase 1 study beginning summer 2020. About FREESIAS and how it is related to Phase 1 clinical trials. Roche and Genentech are sponsoring a non drug trial to develop biomarkers for future […]
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 moreKIK-AS Clinical Trial
Watch a webinar about the KIK-AS trial. The KIK-AS clinical trial, sponsored by GeneTX Biotherapeutics is now open. This is a study of the safety and tolerability of GTX-102 in children with Angelman syndrome. Currently, the study is […]
Read moreMusic Study at Vanderbilt
Music in Children and Families Online Survey Study The Vanderbilt Music Cognition Lab is recruiting families of children 6 months to 5 years old (with or without developmental, medical, or other health impairments) to take an online survey. The study will ask […]
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 6 – 18 months old. 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 moreSurvey Study to Inform Medical Community
Overview The purpose of this study is to obtain information about the general quality of life of children and adults with Angelman syndrome, to better understand specific problems that occur in some individuals and to learn about effects of current […]
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, Boston Children’s Hospital and Ionis Pharmaceuticals 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 […]
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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