UNDERSTANDING THE RETT REGISTRY UK AND THE CLINICAL TRIAL PROCESS

Reverse Rett has been providing clinical trial recruitment and support services since the first UK drug trial started in 2017. We started the Rett Registry UK all the way back in 2014 as a platform for recruitment for clinical trials and have done much to improve the registry since.

We know from questions we’ve been getting from families and caregivers recently, that it isn’t always clear how people can express interest in being part of UK clinical trials.

So here is a brief explanation of the process below. Do feel free to get in touch with us with questions and comments We can only improve things with your help.

Sign up to the Rett Registry UK

When a clinical trial is due to begin in the UK and sometimes before that point, we write to the families of registered patients in the relevant demographic For example, if we know the age group, we write to families of patients in that age group only, or if the company only want patients within one hour of the trial site, we write to those families only

In this first communication, we are asking only if you would like to express interest in the trial. Families are asked to answer Yes or No in response to the email and have the opportunity to ask any questions they may have. Expressing interest in the trial at this stage does not mean that the family have consented to being part of the trial. It simply gives Reverse Rett permission to contact you again with regards to this trial and enables us to identify which patients’ families do not want them to take part.

Are you registered?

If families write back with a ‘yes, ’ the patient’s name goes on a list in the order in which the response has been received You can also send an email directly to andy@reverserett.org.uk if at any point you are interested in taking part in a trial and we can mark your expression of interest into the Rett Registry UK for you

We want to be as fair as possible to all patients and families and want to do everything we can to ensure this process is smooth as possible for everybody involved

If anybody has any questions on this topic then please contact me at andy@reverserett.org.uk and I'll help all I can.

Once you have registered, set your inbox up to flag up emails from Rett Registry UK