We are delighted to announce the launch of the new Rett Registry UK app.
Rett Registry UK is the most comprehensive registry of patients with Rett Syndrome in the UK, built and maintained by Reverse Rett.
First launched in 2014, the Rett Registry UK has long been a part of the work we have been doing to ensure that we can demonstrate the need for and subsequently deliver emerging treatments to UK patients.
But the need for the Registry has grown over the years, with our expanding involvement in recruitment and retention for UK clinical trials and ever-increasing data protection responsibilities.
We knew we needed to fortify the UK Registry, to build it into a tool which is not just more useful to our work but which is inherently useful for parents and carers now.
And so the new Rett Registry UK App was born. The app contains a suite of features to help reduce the life admin associated with a Rett diagnosis, link to vital research-based health information, and connect up to the wider community. You can also contact the Reverse Rett team directly through the Registry at any time, re clinical trials, health information, or anything else.
If you care for one of the almost 400 UK patients already registered with Reverse Rett, you should have received an email telling you how to login to the new Registry.
“The best way for families to demonstrate the urgent need for UK clinical trials, emerging treatments and to assist the development of better clinical care for children and adults with Rett Syndrome, is to join the Rett Registry UK. Our strength in advocating for improved outcomes, treatments and cures is in numbers. Please add your loved one to the Registry today.”
– Rachael Stevenson, CEO, Reverse Rett
The Rett Registry UK was designed by Lluis Mather Mather.io