The Global Angelman Syndrome Registry
- Conditions
- Angelman Syndrome
- Interventions
- Other: Observational study only
- Registration Number
- NCT05293184
- Lead Sponsor
- Foundation for Angelman Syndrome Therapeutics, Australia
- Brief Summary
The Global Angelman Syndrome Registry is an online patient organisation driven registry to collect information about the natural history of children and adults with Angelman Syndrome. The registry will facilitate 1) recruitment for clinical trials into therapies and interventions to benefit participants with Angelman Syndrome and their families, and 2) advancement of research and best standards of care for Angelman Syndrome.
The registry is currently available in English, Spanish, Traditional Chinese, Italian, Polish, Hindi, and Brazilian Portuguese.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 5000
- Diagnosis of Angelman Syndrome
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Arm && Interventions
Group Intervention Description Individuals with Angelman Syndrome Observational study only Individuals from birth to adulthood with Angelman Syndrome
- Primary Outcome Measures
Name Time Method Gather longitudinal data on individuals living with Angelman Syndrome 70 years (lifespan) Parent/ caregiver reporting on diagnosis, clinical status, and patient-reported outcomes of individual living with Angelman Syndrome. This will be achieved by inviting parents/ caregivers with additional questionnaire like modules, and tracking changes in their responses over time.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
Queensland University of Technology
🇦🇺Brisbane, Queensland, Australia