What is rettX?

rettX is the patient registry of Rett Syndrome Europe — a European network of Rett Syndrome associations. The registry collects, with full consent, structured information about people living with Rett Syndrome so that researchers, clinicians, and patient organisations can better understand the condition and accelerate therapies.

This site documents how rettX is built: its architecture, the governance constitution that all of its repositories share, the specifications that drive new work, and the decisions we have made along the way.

The patient-facing public site lives at rettx.eu. The caregiver app lives at app.rettx.eu.

Architecture The six-repository ecosystem and how data flows through it.

Governance The program constitution that governs every rettX repository.

Specifications Cross-cutting specs that drive new features across the stack.

Decisions Architecture decision records (ADRs) capturing why we built it this way.

Three things to know

Patient-first

Every decision is anchored in a constitution that puts patient well-being, consent, and dignity ahead of engineering convenience.

Open by default

This site, the program governance, and our libraries are public. Application code that touches patient data is private — see the ecosystem map.

Built in the open

All work is tracked in GitHub. Cross-cutting changes flow through a public spec process before any code is written.