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The Global Angelman Syndrome Registry

NCT05293184 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 5000

Last updated 2024-02-23

No results posted yet for this study

Summary

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.

Conditions

Interventions

OTHER

Observational study only

Sponsors & Collaborators

  • Queensland University of Technology

    collaborator OTHER

  • Foundation for Angelman Syndrome Therapeutics, Australia

    lead OTHER

Principal Investigators

  • Helen (Honey) Heussler, MBBS, FRACP DM · The University of Queensland

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2016-09-28
Primary Completion
2099-12-31
Completion
2099-12-31

Countries

  • Australia

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT05293184 on ClinicalTrials.gov