The Global Angelman Syndrome Registry

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.

Recruiting

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Key information

Conditions

Angelman Syndrome Abnormalities, Multiple Central Nervous System Diseases Chromosome Disorders Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Imprinting Disorders Movement Disorders Nervous System Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

Queensland University of Technology

Brisbane, Queensland, 4000, Australia

Location status: Recruiting

Location contact

Honey Heussler, FRACP DM

PRINCIPAL_INVESTIGATOR

Megan Tones, PhD

CONTACT

[email protected]

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Diagnosis of Angelman Syndrome

Exclusion criteria

Treatment and study plan

Observational study only

Other

Primary outcomes

Gather longitudinal data on individuals living with Angelman Syndrome

Time frame: 70 years (lifespan)

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.

Study contacts

Contact information is provided by the study sponsor or research team.

Megan Tones, PhD

CONTACT

[email protected]

Sponsors and collaborators

Lead sponsor

Foundation for Angelman Syndrome Therapeutics, Australia

Other

Collaborators

Queensland University of Technology

Registry information

Acronym: GASR

Important dates

Study start: 2016
Primary completion: 2099
Study completion: 2099
First posted: Mar 24, 2022
Registry last updated: Feb 23, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting