A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.
Kathryn R Napier, Megan Tones, Chloe Simons...
https://pubmed.ncbi.nlm.nih.gov/28764722Actively Recruiting
All Genders
ID05293184
The Global Angelman Syndrome Registry
Led by Foundation for Angelman Syndrome Therapeutics, Australia · Updated on 2024-02-23
5000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
Sponsors
F
Foundation for Angelman Syndrome Therapeutics, Australia
Lead Sponsor
Q
Queensland University of Technology
Collaborating Sponsor
AI-Summary
What this Trial Is About
The Global Angelman Syndrome Registry is an online platform designed to collect detailed information about the natural history of both children and adults living with Angelman Syndrome. This registry aims to support research and improve care by facilitating recruitment for clinical trials focused on therapies and interventions that could benefit individuals affected by this condition and their families. It is supported by the Foundation for Angelman Syndrome Therapeutics, Australia, and is accessible in multiple languages including English, Spanish, Traditional Chinese, Italian, Polish, Hindi, and Brazilian Portuguese. Participants of all ages with Angelman Syndrome can join this observational study, which does not involve any active treatment but focuses on gathering comprehensive data over time. The registry welcomes individuals from birth to adulthood and collects information longitudinally to better understand the condition across the lifespan. Participants provide information that contributes to long-term tracking of health and development related to Angelman Syndrome. Researchers use this data to analyze patterns and outcomes, helping to guide future research and care standards. The registry supports ongoing monitoring and facilitates clinical trial recruitment, and participants can remain involved over many years as data is gathered continuously to enhance understanding of Angelman Syndrome.
CONDITIONS
Brief Title
The Global Angelman Syndrome Registry
Who Can Participate
All Genders
Eligibility Criteria
You may qualify if you...
- Diagnosis of Angelman Syndrome
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote) to confirm eligibility
Long-term Monitoring
Duration - Up to 70 years (lifespan)
Participants are observed over time to gather longitudinal data on individuals living with Angelman Syndrome.
Periodic assessments depending on participant availability
Trial Site Locations
Total: 1 location
1
Queensland University of Technology
Brisbane, Queensland, Australia, 4000
Actively Recruiting
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Research Team
M
Megan Tones, PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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Published Research Related To This Trial
Research protocol: The initiation, design and establishment of the Global Angelman Syndrome Registry.
M Tones, M Cross, C Simons...
https://pubmed.ncbi.nlm.nih.gov/29633452Does the registry speak your language? A case study of the Global Angelman Syndrome Registry.
Megan Tones, Nikolajs Zeps, Yvette Wyborn...
https://pubmed.ncbi.nlm.nih.gov/37858180Association between early and current gastro-intestinal symptoms and co-morbidities in children and adolescents with Angelman syndrome.
G Leader, S Whelan, N N Chonaill...
https://pubmed.ncbi.nlm.nih.gov/36052644Relationships between challenging behavior and gastrointestinal symptoms, sleep problems, and internalizing and externalizing symptoms in children and adolescents with Angelman syndrome.
Geraldine Leader, Rebecca Gilligan, Sally Whelan...
https://pubmed.ncbi.nlm.nih.gov/35797778