The Global Angelman Syndrome Registry
Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Diagnosis of Angelman Syndrome
Locations
Other Locations
Australia
Queensland University of Technology
RECRUITING
Brisbane
Contact Information
Primary
Megan Tones, PhD
curator@angelmanregistry.info
Time Frame
Start Date: 2016-09-28
Estimated Completion Date: 2099-12-31
Participants
Target number of participants: 5000
Treatments
Individuals with Angelman Syndrome
Individuals from birth to adulthood with Angelman Syndrome
Related Therapeutic Areas
Sponsors
Leads: Foundation for Angelman Syndrome Therapeutics, Australia
Collaborators: Queensland University of Technology