The Global Angelman Syndrome Registry

Recruiting

• Conditions: Angelman Syndrome

• 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

Study Timeline

• Study Start: 2016-09-28
• Study First Submitted: 2017-06-27
• Study First Submitted QC: 2022-03-14
• Study First Posted: 2022-03-24
• Status Verified: 2024-02
• Last Update Submitted: 2024-02-21
• Last Update Posted: 2024-02-23
• Primary Completion: 2099-12-31
• Study Completion: 2099-12-31

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 5000

Inclusion Criteria

• Diagnosis of Angelman Syndrome

Exclusion Criteria

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

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.

Trial Locations

Locations (1)

Queensland University of Technology; 🇦🇺 Brisbane, Queensland, Australia