Welcome to the Angelman Registry
The Angelman Registry is a tool to help medical professionals and researchers learn more about individuals with Angelman Syndrome (AS). The Registry will create new opportunities to gain insight and understanding about AS, and providing an important tool for both facilitating research and enabling clinical trial sponsors to quickly identify suitable patients for each study.
The Registry is a global initiative that will collect data on individuals with AS through a series of online surveys in order to build the largest and most comprehensive global collection of information on Angelman Syndrome to date.
Here is your chance to be a part of building knowledge for a brighter future for those with Angelman Syndrome.
The Angelman Registry is overseen by the Angelman Registry Advisory committee. The committee includes Medical professionals, patient organisations and parent representation.
The functions of the committee are to guide the development and direction of the Registry and to approve the use of the Registry to respond to specific queries from research groups around the world.
The Terms of Reference for this committee and the Charter for the Australian Angelman Registry are available for your information.
For more information on the Angelman Registry, please contact firstname.lastname@example.org