Staying healthy with Rett Syndrome

Recent research has shown that people with Rett Syndrome can live into their 50’s with adequate medical care, yet the condition is still poorly understood amongst the medical community worldwide.

Doctors who are unfamiliar with Rett syndrome will often read outdated information suggesting that Rett syndrome is a degenerative disorder which leaves them with the expectation that girls and women with Rett will not survive into adulthood. Although some girls with Rett syndrome do not survive into adulthood, most can, with adequate health care.

 

Clinical trials

Clinical trials of gene therapies for Rett syndrome are in Canada, USA, UK and Australia. The numbers needed for these first clinical trials are very small.

The best way to stay updated about UK Rett syndrome clinical trials is to register the person you care for on the Rett Registry UK. This gives us permission to contact you directly as and when any information about upcoming trial opportunities becomes available.

You can also contact the trial sites directly via email through details shared on the clinical trial listing on clinicaltrials.gov.

If you are interested in participating in UK clinical trials either now or in the future, it may also help to have your child seen by one of the clinicians involved in UK Rett syndrome clinical trials.

These are currently: Prof Banka-Manchester, Dr Lumsden-London, Dr Shetty-Edinburgh. Find more information about these clinicians and how to be referred to their clinics through the button below.