The Global Angelman Syndrome Registry: A Powerful Tool for Research and Collaboration

Quick Overview

Meagan Cross, chairperson of FAST Australia and board member of FAST US, spoke at the 2018 FAST Science Summit about the Global Angelman Syndrome Registry. The registry, established by Cross and her colleagues in Australia, aims to collect information from caregivers of individuals with Angelman Syndrome. The registry has already grown to over 800 participants and has published research papers in the Journal of Intellectual Disability. Cross highlighted the benefits of joining the registry, including the ability to customize queries, access pre-populated information, and participate in surveys and clinical trials. She encouraged attendees to join the registry and emphasized the importance of their participation in advancing research on Angelman Syndrome.

Introduction

In this talk, we will discuss the Global Angelman Syndrome Registry, a project aimed at collecting valuable information about individuals with Angelman Syndrome. Meagan Cross, a dedicated mother and chairperson of FAST Australia, has played a crucial role in establishing this registry. We will explore the goals and achievements of the project, as well as the benefits of participating in the registry.

Joining the Registry

If you have questions about the registry, Meagan Cross is the person to go to. She has used her expertise in qualification and information systems science to help establish the Global Angelman Registry in collaboration with colleagues in Australia. Meagan is passionate about the registry and encourages everyone to join. By joining the registry, you can contribute to valuable research and help advance our understanding of Angelman Syndrome.

The Importance of the Project

Meagan emphasizes the importance of the Global Angelman Syndrome Registry. She highlights the need for more participants to join and shares the progress made so far. The registry has already published two research papers and joined a collaboration in Australia to promote clinical trials. With over 800 participants and counting, the registry aims to reach 1,000 participants in the near future.

Benefits of Participating

Participating in the registry offers numerous benefits. The registry collects a wide range of information, including natural history, developmental milestones, and medication details. This information can be used by researchers to recruit participants for clinical trials and research projects. Additionally, the registry allows for custom queries and surveys, providing valuable insights into various aspects of Angelman Syndrome. By participating, you can contribute to meaningful research and save time and money in the process.

Future Developments

The Global Angelman Syndrome Registry is an ever-evolving project. Meagan discusses upcoming developments, such as making the registry more visually appealing and user-friendly. The team behind the registry includes dedicated researchers and developers who are constantly working to improve the project. Meagan also mentions plans to create a unique identification number for each participant, allowing for easy linkage with other studies and clinics.

How to Join

Joining the registry is simple and can be done online. Meagan provides a link and encourages readers to sign up. Once registered, participants can take their time to fill out the necessary information. Meagan advises setting aside an hour or so to complete the registry, ensuring accuracy and completeness. After signing up, participants can visit the registry table to receive a blue sticker, indicating their contribution to research.

Conclusion

Meagan concludes by urging readers to join the Global Angelman Syndrome Registry. She emphasizes the importance of being actively involved in research and encourages everyone to take advantage of this valuable resource. By participating in the registry, individuals can contribute to advancements in understanding and treating Angelman Syndrome.