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The Global Angelman Syndrome Registry
Sponsor: Foundation for Angelman Syndrome Therapeutics, Australia
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.
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
5000
Start Date
2016-09-28
Completion Date
2099-12-31
Last Updated
2024-02-23
Healthy Volunteers
No
Conditions
Interventions
Observational study only
Locations (1)
Queensland University of Technology
Brisbane, Queensland, Australia