The Global Angelman Syndrome Registry
ConditionAngelman Syndrome
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorFoundation for Angelman Syndrome Therapeutics, Australia
About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
Diagnosis of Angelman Syndrome
Disqualifiers
None
Trial population
Individuals with a diagnosis of Angelman Syndrome
Trial design
Design model
Case-only
Time perspective
Prospective
Treatments tested in this trial
Observational study only
Other intervention
Treatment groups
5,000 Participants
are divided into 1 treatment groupGroup A: Individuals with Angelman Syndrome1 intervention
Trial outcomes
Primary outcomes
1
Gather 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)Sponsors and contacts
Click on the lead sponsor to view all of their trials.
Foundation for Angelman Syndrome Therapeutics, Australia
Lead sponsor
The University of Queensland
Sponsor institution
Source ClinicalTrials.gov