Introducing rettX, a pan-European patient registry dedicated to Rett Syndrome, a project implemented by Rett Syndrome Europe.
Developed in close collaboration with our Scientific Advisory Board, subject matter experts across Europe, and our network of local Rett Syndrome associations, rettX aims to collect demographic and medical data from families. This initiative aims to foster community support, advance research, and improve patient care while ensuring privacy and data security.
The name ‘rettX’ reflects the project’s focus on Rett Syndrome and the crucial role of the X chromosome in this condition. The ‘X’ also serves as a riddle, symbolizing the unknowns we strive to uncover – just like the X in mathematics represents something yet to be solved. It embodies our commitment to contributing toward unriddling a cure and deepening understanding of the disorder.
rettX has been growing step by step, through a thoughtful approach that balances ambition with the reality of limited resources. From the start, the project has been shaped by families and caregivers who are committed to improving the future for those affected by Rett Syndrome.
The first phase was a pilot in Spain, where we carried out a census to gather basic demographic information about individuals living with Rett Syndrome. This initial effort helped us understand the scale of the community and gave us a solid starting point for expanding the project across Europe.
We are now in the second phase, where we’ve put in place a tool that allows caregivers to share key patient information, like name, surname, birth date, country of birth, gender, confirmation of Rett Syndrome diagnosis, and, when available, genetic mutation details. This tool wasn’t built overnight – it came together thanks to many hours of volunteer work, following best practices for privacy and usability. We’ve taken a cautious, gradual approach, starting with a soft launch in Spain, Portugal, Turkey, and a few other countries to make sure everything works properly. Part of this process included testing and validating translations to ensure families feel comfortable using the tool in their own language. Today, rettX is already available in 15 languages, which is a big step toward making it as inclusive and accessible as possible.
The next phase will focus on adding surveys to gather more detailed information about life with Rett Syndrome. Once we’ve collected the basic demographic and diagnostic data, we’ll start reaching out with short, focused surveys, always keeping in mind how busy and stretched caregivers already are. Our goal is to ask for just small bits of information at a time, targeting specific groups, so that participation feels manageable and respectful of everyone’s time.
This step-by-step approach helps ensure that rettX continues to grow in a sustainable way, driven by the community and for the community.
To participate in rettX, caregivers follow a simple process: first, they create a user account, then register their patient, and finally upload a diagnosis of Rett Syndrome for validation. This ensures that the information collected is accurate and reliable, forming a solid foundation for research and advocacy.
At rettX, we prioritize data privacy and security. The registry is built with robust measures to protect personal information and comply with European GDPR data protection regulations. If you have any concerns or questions about how your data is handled, please contact our Data Protection Officer at dpo@rettx.eu. You can also review our Privacy Policy in your preferred language here: https://www.rettx.eu/privacy-policy
rettX is committed to building a stronger community and shaping the future of Rett Syndrome research and care across Europe.
Ready to participate? You can start your registration today!