Observational Studies
Observational studies play an important role in advancing understanding of Angelman syndrome. Unlike clinical trials that test new treatments, observational studies collect information about how the condition presents and changes over time without introducing experimental therapies. The knowledge gained helps improve care, strengthen research design, and support the development of future treatments. Below are current observational research opportunities that may be of interest to families.
Angelman Syndrome Natural History Study
A natural history study follows individuals over time to better understand Angelman syndrome across the lifespan. This research helps define meaningful outcomes and strengthens the design of future clinical trials.
Canadian participating sites
- BC Children’s Hospital — Vancouver, BC
- Alberta Children’s Hospital — Calgary, AB
- Children’s Hospital of Eastern Ontario (CHEO) — Ottawa, ON
Screening for CVI in Angelman Syndrome
A virtual observational study exploring Cerebral Visual Impairment (CVI) in individuals with Angelman syndrome. Participation involves a one-time caregiver interview about visual functioning (about 30 minutes).
Who can participate
- Caregivers of individuals with Angelman syndrome (any age)
- All molecular subtypes welcome
- One-time virtual visit