Current Research Studies

Abnormal Language Pathway In Children with AS

Dear Families Interested in Angelman Research: We at the Children’s Hospital of Michigan are looking to recruit subjects for a research study entitled “Abnormal Language Pathway in Children with Angelman Syndrome”. We are interested in looking at brain structure and […]

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 […]

Angelman Syndrome Natural History Study

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 […]

Augmentative 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 […]

Brain 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 […]

Caregiver 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 […]

COA 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 […]

DISCUS Video Capture Study

DISCUS (Digital Study Capture to Understand Angelman Syndrome on OV101), sponsored by Ovid, is recruiting participants that are at least 4 years old, qualified and scheduled to enroll in either NEPTUNE or ELARA. The goal of the DISCUS study is […]

Experiences of Adult Siblings Study

Experiences of Adult Siblings of Individuals with Intellectual Disabilities This study is being conducted by Natasha Shukla, M.S., a student at Texas Women’s University, as part of her dissertation. The study will explore the experiences of adult siblings of individuals […]

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 […]

FREESIAS: 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 […]

Harvard 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 […]

KIK-AS Clinical Trial

Join representatives from GeneTX Biotherapeutics on Wednesday, February 19 at 7pm central for an informative webinar about the KIK-AS trial. Link to webinar: https://www.youtube.com/watch?v=Egpj5oTeVTg The KIK-AS clinical trial, sponsored by GeneTX Biotherapeutics is now open. This is a […]

Music 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 […]

Neptune phase 3 clinical study

Online pre-screening process The online pre-screening process begins with ages 9 – 12 (August/October). The second age group (beginning November/December) will be ages 4-8. The third age group (beginning January/February 2020) will be ages 2-3. Ovid Therapeutics is continuing a […]

Nerve Function Study at Massachusetts General Hospital in Boston

Enrolling participants with AS The study is enrolling participants with AS between the ages of 4 – 12 to visit Massachusetts General Hospital (MGH) in Boston to conduct a nerve function study. Here’s how it will work: One visit for […]

PANDA: 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 under 5 years old. This study aims to improve understanding of how children with Angelman […]

Research 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 […]

Sleep 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 […]

Tele-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 […]

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 […]

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