UNDERSTANDING UK RETT SYNDROME CLINICS

In the UK, ‘Rett clinics’ typically emerge when a given specialist has a special interest in Rett Syndrome and starts to see an increasing number of these patients.

These specialists are often neurologists because Rett Syndrome is a brain disorder and also because a high number of children with Rett Syndrome develop seizures.

The different specialists leading these clinics each have different skills and experience with patients with Rett Syndrome and will naturally have different areas of expertise because of the medical speciality they come from

Existing UK Rett clinics, (with the exception of the CIPP Rett Centre*) are funded through the NHS and currently receive no external funding from patient organisations

Rett UK provide family support for families attending clinics at Manchester, Cardiff, Nottingham and the Evelina Children’s Hospital.

Reverse Rett provide clinical trial support services to families and clinics participating in UK clinical trials. This currently includes the CIPP Rett Centre, Manchester, Nottingham, the Evelina Children’s Hospital and Edinburgh

See overleaf which clinics are for children and which are for adults. It also shows the regularity of the clinics and the speciality of the leading clinician All of the clinicians detailed below have been or are currently, UK clinical trial sites.

Children & Adults

Children only

We are currently working with existing clinics and with our colleagues at Rett UK, to explore how we can support the development of UK clinics so that when effective treatments for Rett Syndrome become available, there are established equitable UK clinics to deliver treatments.

We recently sent a survey out via the Rett Registry UK, to ask families about their experiences of clinics and what their priorities are, in terms of further development.

Thank you to all those who shared their experience to help us learn.

Each clinic experience has been quite different I think the true benefit comes from when specialists really get to know the specific child, the things that impact their day to day lives etc Often when it is a one-off appointment, I often think that there is less gained from the apt, especially when SO many professionals are involved in our child's care