What is the Global Angelman Syndrome Registry (GASR)?
About the GASR
The Global Angelman Syndrome Registry is an international, caregiver-led initiative designed to collect and centralize data for Angelman syndrome, for the benefit of all individuals living with AS. Through a secure online platform, parents and caregivers from around the world contribute valuable information about diagnosis, symptoms, development, medications, and more. By sharing their lived experiences, they help shape a powerful resource that enables collaboration, reduces duplication, and fast-tracks scientific progress.
A Global Effort to Advance Care and Treatments
The Registry was developed by FAST Australia, with leadership from FAST Australia’s CEO Meagan Cross, to bring families, researchers, clinicians, and advocates together in a global effort to advance care and uncover treatments. FAST Headquarters provides ongoing support, including a US-based curator. GASR is currently the largest Angelman syndrome dataset, with more than 2,000 registered participants.
Why is enrolling in GASR important?
As a caregiver, you know your loved one living with Angelman syndrome better than anyone else. The data you can provide is instrumental in understanding Angelman syndrome and its day to day impact on your loved one.
Additionally, AS is a variable condition, and each individual is unique. To have a complete understanding of Angelman syndrome, we need data about many, many individuals living with Angelman syndrome. Consequently, each and every parent and caregiver has valuable information to contribute.
After registering, you will receive an email with a link to consent and activate your account. Once you’ve consented and chosen how you want the data to be used, you can then complete modules (surveys) about various aspects of your loved one’s health and life.
Are you a clinician or researcher interested in exploring GASR data?
If you’re exploring a research idea, planning a clinical study or looking to collaborate, GASR would be pleased to discuss how the registry could support your work. You can use the Data Catalogue to view a high-level overview of the information collected by the Registry. You can request data access to help identify the most appropriate data and discuss potential collaboration opportunities.