Help Find New Treatments For Angelman Syndrome

Are you interested in having your family or your individual with Angelman Syndrome participate in research studies? Studies may involve a phone interview, surveys or mailing of information. Some studies may require you to travel to other cities. Others may involve blood tests, EEG’s and other medical procedures.

Be the Cure for Angelman Syndrome
Participate in research through universities and medical centers throughout the country.

As new studies become available the ASF will contact known AS families with the opportunity to participate.

 

Active Research Studies

If there is a research study below in which you and your family would like to participate, see the description for contact information to receive more information or to enroll.

Gastro, Sleep and Behavior Problem Survey

This study will look to study the relationship between gastrointestinal symptoms, sleep problems and behavior problems in people with AS 3 to 18 years old.

Research Interview

A non-medication research interview study seeking information about symptoms and effects on daily life that children and adults with Angelman Syndrome experience, from the caregiver’s perspective. Participants agree to a 60-90 minute telephone interview.

Transition to Healthcare Services

This is a survey study through UNC Greensboro to study families’ experiences with their child’s transition to adult healthcare services. The study is open to parents/caregivers of children with intellectual or learning disabilities, between 18 and 35.

Parents Use of Music 

This is a survey study through Harvard University to study how parents and caregivers use music with their child with Angelman Syndrome. The study is open to all ages and the survey takes approximately 45 minutes. 

Caregivers of Children, Adolescents & Adults with AS

This is an interview study to gather information about caregivers’ experiences with Angelman syndrome (AS) to better understand the symptoms and impacts of AS.  The study is sponsored by Ovid Therapeutics, and conducted by ICON, a health research organization. 

Anxiety in Angelman Syndrome

This study aims to characterize anxiety in AS patients using formalized anxiety screening tools that have been previously used with non-verbal or minimally verbal individuals. Identifying the frequency and severity of anxiety symptoms present in individuals with AS will help in developing new treatments that target these symptoms.

Augmentative and Alternative Communication (AAC) Immersion Project

This study at Portland State University will evaluate the impact of communication partner coaching in Augmentative and Alternative Communication (AAC) intervention.

Speech Generating Devices in Children With Angelman Syndrome

This study at Boston Children’s Hospital will examine the use of an intervention to teach individuals with Angelman Syndrome aged 4 – 15 years, how to use a speech generating device (SGD) to communicate.

OV101 Clinical Study

Ovid Therapeutics is sponsoring a clinical research study called the STARS study. The STARS study will evaluate the safety and effectiveness of an investigational medicine on various aspects associated with Angelman syndrome.

Abnormal Language Pathway in Children with AS

This study at the Children’s Hospital of Michigan will study brain structure and connectivity in those individuals with Angelman syndrome. Using a novel MRI technique, investigators hope to further understand the connections in the brain that are involved in language generation and motor function.

Brain Imaging Study

The Angelman Syndrome Foundation awarded a grant to fund a research study at the University of North Carolina (UNC) School of Medicine. The research team is now recruiting participants to examine the brain development of children with Angelman syndrome.

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 and deletions of human chromosome 15q.

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 while recording his/her physiological activity. They will also ask parents to complete surveys about your experiences as a parent and about your child’s interests in music and other arts activities.

Nerve Function Study at Massachusetts General Hospital in Boston

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.

Longitudinal study of how children with AS develop over time

The Purdue Neurodevelopmental Family Lab at Purdue University is recruiting participants nationwide for a research study on the early development of children with Angelman syndrome. Families of children ages birth to 48 months complete online forms and optional phone interviews annually for 3+ years. The surveys and interviews cover topics about general child development (e.g. thinking, motor, social skills), medical needs, problem behaviors, and child strengths.