A Wealth of Information
Parents and caregivers are driving the collection of data by contributing to the largest dataset on Angelman syndrome by entering details of their loved one/s diagnosis, medical history, development and more in a series of online modules. The Global Angelman Syndrome Registry is a tool for understanding developmental progress, medication and seizure management, but more importantly, it provides an invaluable resource to advance the search for therapeutics.
With pharmaceutical companies anticipating drug trials to treat the syndrome, the Registry provides the perfect mechanism to analyse, recruit and measure the effectiveness of treatments.
The Registry was initiated and funded by the Foundation for Angelman Syndrome Therapeutics (FAST) Australia with support from the Mater Medical Research Institute, the Mater Children’s Hospital in Brisbane and the Royal Children’s Hospital in Melbourne. The Registry infrastructure was developed by the Queensland University of Technology in Brisbane. The project meets strict health data collection and storage requirements for participants around the world.