The Global Angelman Syndrome Registry
Launched by FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS, AUSTRALIA · Mar 14, 2022
Trial Information
Current as of July 25, 2025
Recruiting
Keywords
ClinConnect Summary
The Global Angelman Syndrome Registry is an online research project designed to gather important information about people, both children and adults, who have Angelman Syndrome. This registry aims to help researchers understand the condition better, which could lead to new treatments and improved care for those affected by Angelman Syndrome. By joining the registry, participants can also be considered for future clinical trials that may benefit them or their loved ones. The registry is available in several languages, making it accessible to a wide range of families.
To participate in the registry, individuals must have a confirmed diagnosis of Angelman Syndrome. There are no restrictions based on age or gender, meaning everyone with this diagnosis is encouraged to join. By signing up, participants will provide valuable information that can help shape future research and treatments, and they will also help create a supportive community for families dealing with this condition.
Gender
ALL
Eligibility criteria
- Inclusion Criteria:
- • Diagnosis of Angelman Syndrome
- Exclusion Criteria:
- • -
About Foundation For Angelman Syndrome Therapeutics, Australia
The Foundation for Angelman Syndrome Therapeutics (FAST) Australia is a dedicated non-profit organization focused on advancing research and therapeutic options for individuals affected by Angelman syndrome, a rare neurodevelopmental disorder. Committed to fostering collaboration among researchers, healthcare professionals, and families, FAST Australia seeks to accelerate the discovery of effective treatments through funding innovative research initiatives and clinical trials. By raising awareness and supporting scientific advancements, FAST Australia aims to improve the quality of life for those living with Angelman syndrome and ultimately find a cure.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Brisbane, Queensland, Australia
Patients applied
Trial Officials
Helen (Honey) Heussler, MBBS, FRACP DM
Principal Investigator
The University of Queensland
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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