Flagship initiative
European Rett Syndrome patient registry
Where families across Europe help advance care, research and treatments for Rett syndrome, in one secure place, in 15 languages.
About the registry
A Europe-wide registry, built with the community.
rettX is the European patient registry for Rett syndrome, an initiative of Rett Syndrome Europe. It was developed in close collaboration with our Scientific Advisory Board, subject-matter experts from across Europe, and our network of national associations.
The registry collects demographic and diagnostic information from families to support research, advance care, and bring the European Rett community together, while keeping every record secure and GDPR-compliant.
The “X” in rettX nods to two things: the X chromosome, where most Rett mutations sit, and the unknown that we’re working alongside families and researchers to uncover.
511
Patients in the registry
20
European countries with families enrolled
15
Languages the registry is available in
Live from rettX · see the latest at rettx.eu/data
How to take part
Three steps to join the registry.
Caregivers can register a person in minutes, and the team validates each record against the diagnosis you upload, so the data behind future research is reliable.
02
Register the person you care for
Add their name, date of birth, country and gender. Just the basics to get started.
03
Upload the diagnosis
The rettX team validates the record and adds the genetic mutation information from the diagnosis.
The roadmap
How rettX is growing, step by step.
We’ve taken a deliberately careful approach: built by volunteers, shaped by families, and rolled out one phase at a time so the platform stays trustworthy and useful for everyone.
Phase 1 · Completed 2024
Pilot in Spain
A first census to gather basic demographic information about people living with Rett syndrome in Spain. The pilot helped us understand the scale of the community and proved the model.
Phase 2 · Live since April 2025
Europe-wide demographic registry
Families across Europe can now register the person they care for. Each record is validated against the official diagnosis. Available in 15 languages, it began as a soft launch in Spain, Portugal and Türkiye and has since spread across the continent.
Phase 3 · Coming next
Targeted, family-friendly surveys
Short, focused surveys to gather deeper information about life with Rett syndrome, sent in small batches, to specific groups, so participation always feels manageable and respectful of caregivers’ time.
Privacy & data protection
Built around GDPR.
rettX is built with strong privacy and security measures, fully compliant with European GDPR data-protection regulations.
If you have any concerns about how your data is handled, you can contact our Data Protection Officer at dpo@rettx.eu, or read the full privacy policy in your language at rettx.eu/privacy-policy.
Take part
Help these numbers grow.
Every family who joins makes the European Rett registry stronger.