Frequently asked questions

rettX is the official European patient registry for Rett syndrome. It’s a secure platform where families can contribute valuable information that helps improve care, research, and support for everyone affected by Rett syndrome.

Because every person with Rett syndrome matters — and every family’s contribution brings us closer to better care and treatments. By joining rettX, you help to:

• Raise visibility of Rett syndrome across Europe
• Support advocacy for better services in your country
• Enable research and future clinical trials
• Build a stronger voice for the Rett community

Joining is simple and only takes a few minutes:

1. Create your rettX account — with your email and basic contact details.
2. Access your private area — once your email is verified, you can log in securely.
3. Add your loved one’s profile — share basic information about them.
4. Submit a diagnosis document — upload a medical report confirming Rett syndrome.
5. Validation — the rettX team reviews the document to confirm eligibility.
6. Once validated, your loved one becomes part of the official rettX registry.

rettX is led by Rett Syndrome Europe (RSE), a non-profit federation of national Rett syndrome associations and experts from across the continent. It is designed by families, for families, in collaboration with medical professionals and data privacy experts.

Yes. We take privacy very seriously. All data is:

• Encrypted and securely stored in the Microsoft North Europe datacenter (Ireland).
• Handled in full compliance with GDPR (EU privacy law).
• Only used for the purposes you consent to.
• You’re always in control and can update or delete your data at any time.

For full details, see our Privacy Policy.

To start, we ask for:

• Your name and contact details
• Basic information about your loved one (age, country, and diagnosis)
• A document confirming the Rett syndrome diagnosis

Later, you may be invited to answer short surveys or update the profile — but that’s always optional.

Yes. You can log in anytime to update details or request to remove your data completely. Your rights are fully respected.

That’s no problem. rettX is designed to complement other initiatives. It helps bring together data across Europe so the Rett syndrome community is seen, heard, and supported at every level.

No. rettX is a patient-led registry, not a clinical trial. It provides valuable real-world data that supports research, improves care strategies, and guides decision-makers.

rettX is a key step toward better treatments. Without data, researchers can’t fully understand the condition or test new therapies. rettX helps make clinical trials possible and supports efforts to advance care and improve outcomes for people with Rett syndrome.

Just visit app.rettx.eu and:

1. Register with your email
2. Fill in the short onboarding form
3. Log in to your private area
4. Add your loved one’s profile
5. Upload a diagnosis document

We’ll review the information and guide you from there.