The first UK clinical trial for a potential treatment for Rett Syndrome was launched in March 2017 under the leadership of Dr Santosh at King's College Hospital in London.
The 24 week STARS study, sponsored by Newron Pharmaceuticals is being tested to reduce breathing irregularities in people with Rett Syndrome.
Whilst the trial was initially launched for patients age 13 and over, the FDA have recently approved an amendment to the protocol enabling patients age 6-13 to take part.
Although the necessary regulatory steps have been taken in order to enable younger UK patients to participate, the UK trial site is currently only recruiting patients age 13 and over.
If you are the parent/carer of a child with Rett Syndrome age 6-13 who has breathing irregularities and you would like to express interest in the study, please register your child on the Reverse Rett Patient Registry in the first instance.
Questions can be directed to firstname.lastname@example.org