Global Angelman Syndrome Registry
The Global Angelman Syndrome Registry is being 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 Centre for Comparative Genomics at Murdoch University in Perth.
The Registry is open to parents or caregivers of an individual with a confirmed diagnosis of Angelman Syndrome.
The key objective of the Global Angelman Syndrome Registry is to set up a parent/ caregiver driven register to collect information about children and adults with Angelman Syndrome. This will allow for researchers conducting clinical treatment trials and other studies into Angelman Syndrome to recruit participants more easily. The registry will also serve other objectives including:
The framework for the Global Angelman Syndrome Registry allows for collaboration with existing projects. The ability to integrate with existing studies will be dependant on the ethics approval obtained to collect the information and the format the information has been collected in. Please contact the Registry Curator on firstname.lastname@example.org if you know of a study and/or study coordinator we should speak to to join forces.
|Adding New Patients to Registry|
Parents / caregivers of a child or adult with Angelman Syndrome are eligible to participate in this registry. The patient must have a diagnosis of Angelman Syndrome confirmed by genetic testing results (or a pending diagnosis).
To participate, please register at www.angelmanregistry.info
For further information, contact Registry Enquiries or refer to the patient information sheet.
|Please see the website for more information|