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COVID-19 and Rett

The coronavirus (COVID-19) outbreak continues to be a time of great difficulty for everyone, especially if you are caring for a child or adult with Rett Syndrome.

We continue to be in close contact with Professor Santosh and team at the Centre for Personalised Medicine and other UK Rett clinicians and will continue to work to bring you the latest information on COVID-19 and Rett.

On this page you will find news articles, updates and resources relating to Covid 19 and people with Rett Syndrome.

If you have a query which has not been addressed, you can submit a question via the form at the bottom of the page. We will endeavour to answer you as quickly as possible.

COVID-19 & Rett FAQ

Recruitment for the clinical trial for Anavex 2-73 for people with Rett Syndrome age 18-45 is ongoing. Currently the trial is paused due to non-availability of the trial sites. Clinical Research Facilities at both Manchester and King’s College Hospital Sites are currently pausing all non-Covid trials.

However, both trial sites are preparing to bring patients in as soon as they are permitted by their local CRF authorities. If you are interested in someone with Rett Syndrome between the age of 18-45 participating in the Anavex 2-73 trial please contact andy@reverserett.org.uk

Plans for a trial in children under 18 are in place, awaiting ethics approval. Please also contact andy@reverserett.org.uk to register interest in this trial.

The GW Pharmaceuticals Cannabinoid Trial was terminated in 2020 due to the on-going disruption of the pandemic. Reverse Rett continues to support UK patients on the open label extension period.

If you have a question which has not been answered here, please contact us on 0161 413 0585 or by email info@reverserett.org.uk or on any of the socials: twitter/insta @reverserett Fb: /reverserett

For more information and any advice, please don’t hesitate to get in touch.

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