Do you know someone with Rett syndrome who has died? 

If the answer to this is yes, first, please accept our deepest and most heartfelt condolences.  

We know that we are reaching out to you to ask for something difficult and hope that you can help us by sharing your and your loved one’s experience to help improve outcomes for children, young people and adults still living with Rett syndrome in the UK. 

There are a number of reasons why this is so important: 

Are we seeing an increased number of deaths in UK patients? 

Over the last few years since the pandemic, we believe we have seen more UK deaths in young people with Rett syndrome than usual. The only way to measure if there has been an increase, and to better understand why this might be, is to compare data from the last few years to previous years. 

Understanding why this might be happening 

We need to better understand the factors which may have impacted your loved one’s longevity by asking you whether their death was expected or not and whether there were any aspects of their clinical care or management which may have contributed to their death. Gathering this information both about UK patients pre-pandemic and post pandemic will help us to analyse what, if anything has changed and what, if anything we can do about it. 

Using this information to help drive new treatments 

We live in a country where the need for a new treatment has to be measured against the cost of those treatments to the UK National Health Service.  

From initial data, it appears that outcomes for UK patients are currently worse than in the USA. As most of the data companies use to determine patient outcomes and life expectancy for people with Rett syndrome are based on US data, there may be less impetus for treatments to be funded in the UK than there should be. 

Supporting upcoming Health Technology Assessments  

Health Technology Assessments are the way that new treatments are assessed for funding in the UK. Whether more people in the UK are dying post-pandemic or not,  we also just simply have to be able to account for as many people with Rett syndrome in the UK as possible so that the number of patients roughly aligns with the estimated incidence of the condition based on the general population.  

That means ensuring that as well as having living patients registered, we also have a record of the children, young people and adults who have lived and were so very loved by everyone who knew them.  

How can we better support families through this most difficult situation? 

As we see an increasing number of deaths in the UK Rett community, we want to do what we can to manage our interactions with families as sensitively and in the most supportive way possible when their loved ones die.  The best people to ask about what we can do to help people in this situation is you. Please be honest. We know that we haven’t always got this right and want to do better in the future. For that we need your help. 

Thank you for helping us. Here is the link to the form: 

Please pass this information on to anyone you think could also help. Thank you.