The European Rett Syndrome Patient Registry is a dedicated platform aimed at collecting vital information about individuals affected by Rett Syndrome across Europe. Its primary goal is to enhance understanding of the condition, support research efforts, and ultimately improve care and treatment options for patients.
This documentation provides an overview of the registry's purpose and guides users through the various features and processes involved. Whether you are a legal guardian looking to contribute information or a healthcare professional seeking to understand the registry's functionalities, this guide offers comprehensive insights.
By participating in the registry, families and caregivers can play a crucial role in advancing research and fostering a community of support. The collected data helps researchers identify patterns, track progress, and develop new strategies for managing Rett Syndrome.
We invite you to explore this documentation to learn more about how the registry works, the importance of your contribution, and how we ensure the privacy and security of all participants.