UK Patient Registry

It is important that we have accurate basic information about people with Rett Syndrome and related MECP2 disorders in the UK for a number of reasons.

It is helping us to demonstrate areas of unmet need in terms of clinical and medical provision for children and adults with Rett Syndrome in the UK.

In 2016, there are also a number of potential treatments for Rett Syndrome emerging and it is likely that we will see an increasing number of clinical trials happening internationally.

We are receiving an increasing number of enquiries from pharmaceutical companies and clinicians with an interest in implementing UK clinical trials.

It is vital that we have basic demographic and contact information for as many UK Rett patients as possible so that we can demonstrate that the need and responsiveness exists in this country for a UK trial to happen.

Please register the person you care about. It only takes a few minutes.  Please note that if you live in the EU and are interested in UK based or other European clinical trials, you can also register.


Under the Data Protection Act 1998, Reverse Rett is committed to safeguarding the privacy of our service users whilst providing a personalised and valuable service.

 The charity is registered with the Information Commissioner's Office and and adheres to the principles laid down under the Data Protection Act in processing personal data.

If, after reading this Data Protection and Personal Privacy Statement you choose to submit personal data, for example, by registering a person with a Rett Disorder, it is deemed that you are thereby giving your consent for that data to be held securely and processed in accordance with this statement and that you are giving your consent for us to contact you in accordance with our aims and objectives.

We will not release personal information we hold on you without your express written permission and we will not sell lists to a mailing company. Anonymised data might be used for the purposes of improving or facilitating improved clinical or medical provision for people with Rett Syndrome in the UK and beyond. If you have any requests regarding your personal information please contact us by post, phone or email.

Read our privacy policy here.

Reverse Rett Registry




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