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 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.
To be eligible for the study participants must have had genetic testing to verify a diagnosis of Angelman syndrome and be between 2-17 years of age. Those who are not genetically verified will be excluded from participation in this study.
There is no direct benefit for your child from enrolling in this study. However, all participants who are enrolled will receive a free MRI scan and neuropsychological evaluation performed by a neuropsychologist. Information pertaining to the MRI and evaluation will be available to participants upon completion of the study. This information will also be beneficial to the research community by helping to generate a further understanding of Angelman Syndrome as a whole. A greater understanding of Angelman syndrome may lead to improved quality of care and/or new treatments for the syndrome in the future.
The minimal, but potential, risks involved in participating in this study include: 1) possible loss of confidentiality (confidentiality will be protected to the full extent required by law); 2) possible reaction to the sedation medication (if needed) for the MRI; 3) other events that are unforeseen or anticipated. To minimize the risks your child will be monitored by a trained pediatric nurse throughout the duration of the MRI scan.
Taking part in this study is voluntary. You may choose to allow your child to take part in the study and later change your mind and withdraw your child from the study. You or your child are free to not answer any questions or withdraw at any time. Your decision will not change any present or future relationships with Wayne State University or its affiliates or other services you or your child are entitled to receive.
Any participants enrolled will be asked to travel to the study site. The cost of travel and meals will not be covered.
If you are interested in enrolling or have questions, please contact:
The Angelman Syndrome Foundation does not endorse any clinical trial or study, but provides information to the AS community for its own consideration.