Reverse Rett started the Rett Registry UK in 2013 because we recognised early how important a UK registry would be for clinical trials and for driving treatments through the UK regulators.
Patient Registries often serve different purposes. They can be databases gathering information about the progression of the disease in individual people or fundamentally, just a list of names, contact information and consent to be contacted regarding clinical trials or other opportunities to take part in research.
When we set up the Rett Registry UK eight years ago, we did it to ensure that we would have a way to methodically recruit UK patients for trials when the time came.
The Rett Registry UK is a warm pool of UK families and carers of people with Rett Syndrome. They are not necessarily supporters of Reverse Rett, nor do they need to be. Their involvement in the Registry is guarded; we reach out to them only with research related opportunities which means when we write to them, they know it is with good reason.
Through the Rett Registry UK, we’ve now managed to recruit effectively for three UK clinical trials. We’ve supported four surveys including the Newron Burden of Disease Study, the King’s College London Breathing Irregularities Survey, the UK Rett Disorders Alliance Symptom Severity Survey and the recent Taysha Gene Therapies Survey which came out just last week.
Crucially, the Rett Registry UK also enables us to recruit families for the CIPP Rett Database, which is both a monitoring system for individuals with Rett and a database of information on the progression of the disease overall in the UK Rett population.
If you are the parent or main carer of a child or adult with Rett Syndrome or a related disorder and you live in the UK, please join the Rett Registry UK.
When we recruit for trials, the registry is the first place we go to. When we seek out the input of families on future treatments for Rett, it’s the first place we go to. When we speak to pharma companies looking to conduct trials, they ask us for the number of patients on our registry, every time. Just signing up for the Rett Registry UK helps demonstrate that in the UK, the desire for treatments for Rett Syndrome is strong. That’s the message we need to be able to send, with our numbers, to pharma, to regulators, we’re here and our children matter. Help us to do that.