The Global Angelman Syndrome Registry (GASR)

Foundation for Angelman Syndrome Therapeutics, Australia

Status: Enrolling

Conditions: Angelman Syndrome

Treatments: Other: Observational study only

Study type: Observational

Funder types: Other

Identifiers

NCT05293184

RG-16-078-AM01

Details and patient eligibility

About

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.

Enrollment: 5,000 estimated patients

Sex: All

Volunteers: No Healthy Volunteers

Inclusion criteria

• Diagnosis of Angelman Syndrome

Exclusion criteria

Trial design

5,000 participants in 1 patient group

Individuals with Angelman Syndrome

Description:

Individuals from birth to adulthood with Angelman Syndrome

Treatment:

Other: Observational study only