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. You can 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.
Abnormal Language Pathway in Children with AS
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 connectivity in those individuals with Angelman syndrome. Using a novel MRI technique, we 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.
Examining Long-term Healthcare Needs of Adults with Developmental Disabilities
The University of Illinois at Chicago is seeking participants for a research study examining the long-term healthcare needs of adults with developmental disabilities. The longitudinal (long-term) study will follow participants over a six-year period, contacting participants in 2014, 2016 and 2018 with a survey to complete.
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.
The Neurobehavioral Phenotype of AS
The Angelman Syndrome Clinic at Riley Children’s Hospital, associated with the Indiana University School of Medicine Department of Psychiatry, is conducting a new research study in individuals ages 3 years and older with Angelman syndrome. This study hopes to move the field of Angelman research forward by developing a greater understanding of specific behavioral symptoms commonly associated with Angelman syndrome, as well as identifying substances in the blood which may be associated with the neurobiology of Angelman syndrome.
The Positive Psychological Experiences Related to Raising a Child with a Developmental Disability
We are currently seeking participants for a Vanderbilt Research Study with the purpose of learning more about the positive psychological experiences related to raising a child with a developmental disability. The study is being conducted by Teresa Ulman, M.S., as a dissertation project under the direction of Dr. Elisabeth Dykens, Ph.D. through the Vanderbilt Kennedy Center.
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 are invited to enroll.
Families 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.