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.
Study Type
OBSERVATIONAL
Enrollment
5,000
Queensland University of Technology
Brisbane, Queensland, Australia
RECRUITINGGather longitudinal data on individuals living with Angelman Syndrome
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.
Time frame: 70 years (lifespan)
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.