At Reverse Rett, we take privacy very seriously. Your information will never be passed on to third parties without your express permission.

If you express interest in a clinical trial, no information is passed to any trial sites until you have been through a pre-screening process with Reverse Rett staff and made the active decision that you would like your person with Rett Syndrome to be referred.

At that time, we provide your name and contact information to the trial site, along with the patient's name, date of birth and other relevant information regarding the referral.

If you express interest in a clinical trial, no information is passed to any trial sites until you have been through a pre-screening process with Reverse Rett staff and made the active decision that you would like your person with Rett Syndrome to be referred.

At that time, we provide your name and contact information to the trial site, along with the patient's name, date of birth and other relevant information regarding the referral.

You can continue to update your information in the Registry on an ongoing basis. It's especially important that you keep your contact information updated. You can also write to us directly via the messaging facility if there is anything you want us to change for you.

Your personal information will not be shared with anyone, under any circumstances, without your express written permission.

Reverse Rett can only access top-level information from your profile - and will only do so for administrative purposes, such as getting in touch directly. This includes your main profile with your contact details, and any demographic information you enter. This is the same for your patient profiles - Reverse Rett staff won’t be able to see any additional information, professionals, conditions, medication, surgery, equipment or hospital admissions you enter. For a full list and categories of data, please see our Privacy Policy.

If for any reason, you would like to delete your profile, you can do so.

Security is built into the core of Rett Registry UK, with secure login, two-factor authentication, device recognition, and a host of other security features to protect your data. Our super-transparent data policies mean that you can always have confidence that your data is safe in our hands.

Being on the Rett Registry UK means that you’ll be first to know about upcoming opportunities to participate in clinical trials of new treatments.

It enables you to keep all your child's records in one place, including appointment letters, information about medications, the different professionals involved with your child, your child's diagnoses, NHS numbers and more. All of this can be saved to the app and downloaded or shared at the click of a finger, especially when you need them quickly for a new doctor, emergency visit or change of school.

We’ve also built the Rett Disorders Alliance’s Rett Syndrome Health Checklist into the app, with comprehensive advice, symptoms, research papers and guidance from health professionals and researchers all accessible to you in the app.