At the 2026 European Conference on Rare Diseases (ECRD), Rett Syndrome Europe presented rettX — the European Rett syndrome patient registry. This post takes a closer look at what rettX is, why it matters, and how families across Europe can take part.
A registry built around families
rettX is a pan-European, patient-led registry designed to collect reliable, family-reported and clinically validated data, transforming it into actionable knowledge. By placing families at the centre and maintaining high data-quality and privacy standards, rettX provides a trusted foundation for long-term progress.
What rettX aims to achieve
- Build a unified European dataset of confirmed Rett syndrome cases
- Support research and real-world evidence generation
- Improve readiness for clinical trials
- Strengthen advocacy and decision-making
- Reduce fragmentation across countries
Data you can trust
Reliable data only helps if it is trustworthy. rettX combines family-reported information with clinical validation, and applies strict privacy standards throughout. The result is a dataset that researchers, clinicians, and advocates can rely on to inform decisions and accelerate progress for the whole community.
rettX was presented at ECRD 2026 alongside research into unmet needs and fragmented care. Read our ECRD 2026 overview for the full picture of RSE’s presence at the conference.
