Angelman Syndrome Global Registry
The Angelman Syndrome Global Registry is a project aimed at collecting data from individuals with Angelman Syndrome to aid research and clinical trials. The registry collects information about development, behaviour, sleep, and medication use. The data is kept private and secure, with no one having access to personal details without consent. The registry is patient-driven and globally accessible, with translations available in multiple languages. The data collected can be used by researchers to identify patterns and similarities among patients, accelerating research and recruitment for clinical trials. The registry is also designed to be a resource for patients and families, providing valuable information about the condition.
Hello everyone, I’m Meagan Cross and I’m here to talk about a project that can significantly contribute to Angelman Syndrome research. This is something that you can participate in and it can greatly aid in the recruitment for clinical trials.
About the Project
This project involves a registry that collects information about development, behaviour, sleep, and the types of medications your children are on. Your information is private and only accessible to researchers for the purpose of recruitment for a project, a trial or a study. They can access our data without your name attached to it and they can run questions through it. This can be extremely valuable for research and development of targeted treatments.
The Importance of Data Collection
Every individual with Angelman syndrome is different. The more data that is collected, the more that similarities or clinical characteristics can be seen. The data you provide can help drive and accelerate research as well as recruit for clinical trials and studies.
Privacy and Consent
No one will have access to your personal details without your consent. Anyone requesting data must go through a governance board made up of families, patient organization representatives and professionals from various disciplines. If the request is acceptable, you will be contacted to provide your permission.
How to Get Involved
Visit angelmanregistry.info to be involved. The registry is online, patient-driven and global. It was FAST funded, but it’s a global project for everyone. The data is completely secured.
The Registry Process
Once you register, you will be asked to enter your information, the child’s information, your address, contact details. You can also nominate a clinician. The only person that can grant access to anyone is the registry curator.
This registry is a collaborative effort that can greatly contribute to Angelman Syndrome research. It’s not just about facilitating research, but also about learning and understanding more about the syndrome. Thank you for your time and participation.
- Title: Angelman Syndrome Global Registry
- Author(s): Meagan Cross
- Author(s)’ affiliation: FAST
- Publication date: 2016-12-03
- Collection: 2016 FAST Educational Summit