A registry for individuals with Angelman Syndrome
The Global Angelman Syndrome Registry
This study is creating an online registry to collect information from people with Angelman Syndrome to help find better treatments and improve care for them and their families.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Sex | All |
| Sponsor | Foundation for Angelman Syndrome Therapeutics, Australia Academic / other |
| Locations | 1 site (Brisbane, Queensland) |
| Trial ID | NCT05293184 on ClinicalTrials.gov |
What this trial studies
The Global Angelman Syndrome Registry is an online platform designed to gather information about the natural history of individuals with Angelman Syndrome, both children and adults. This observational registry aims to facilitate recruitment for clinical trials focused on therapies and interventions that could benefit participants and their families. Additionally, it seeks to advance research and establish best practices for the care of those affected by Angelman Syndrome. The registry is accessible in multiple languages, including English, Spanish, Traditional Chinese, Italian, Polish, Hindi, and Brazilian Portuguese.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with Angelman Syndrome.
Not a fit: Patients without a diagnosis of Angelman Syndrome will not benefit from participation in this registry.
Why it matters
Potential benefit: If successful, this registry could enhance the understanding of Angelman Syndrome and improve recruitment for clinical trials, ultimately leading to better treatment options for patients.
How similar studies have performed: Other registries for rare diseases have shown success in facilitating research and improving patient outcomes, indicating that this approach is promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosis of Angelman Syndrome Exclusion Criteria: \-
Where this trial is running
Brisbane, Queensland
- Queensland University of Technology — Brisbane, Queensland, Australia (Recruiting)
Study contacts
- Principal investigator: Helen (Honey) Heussler, MBBS, FRACP DM — The University of Queensland
- Study coordinator: Megan Tones, PhD
- Email: curator@angelmanregistry.info
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.