Data Objectives
One of the major objectives of the Global Angelman Syndrome Registry is to make data accessible for anyone with an interest in furthering understanding into Angelman syndrome: either for research or care management and for those developing and testing therapeutics to treat symptoms in the disorder.
It is important to us that parents and caregivers are not burdened with repetitive data entry. So, wherever possible, we seek to collaborate with other researchers, match data capture points, and share registry data to populate new studies pending appropriate ethical and regulatory approval.
The ultimate beneficiaries for this project are individuals diagnosed with Angelman syndrome.
We collect data on the individual’s newborn, infancy, and diagnostic history, hospitalisations and surgical procedures, epilepsy, medications, therapies, communication, sleep and more.
Use our interactive tool to search through our data elements and apply to access data.
Requests for data go through the Data Curator to the Global Angelman Registry Governance Board. Simple descriptive statistics such as participant numbers may be easily accessible by emailing datarequest@angelmanregistry.info.
Requirements vary depending on the level of data access required.
Use our online data access form to apply for access today.
