Rett syndrome clinics in the UK

The right clinical care is essential for children, young and adults with Rett syndrome because of the unique combination of debilitating medical symptoms and disabilities involved in having the disorder.

This is largely because many doctors, even consultants, might not have met someone with Rett syndrome before. Sometimes they haven’t even heard of it.

Although there are some specialist Rett syndrome clinics in the UK, depending where in the country you live, it can be difficult to get a referral to them. 

You can find more information and contact details for these clinics and the doctors who run them below.

Long term follow up care/clinical management

Even if you can get into a specialist Rett syndrome clinic at diagnosis, ongoing follow-up, long term intervention and or co-ordination with your local area clinicians is often not possible. 

With a life long, ever-changing multi-system disorder like Rett syndrome, as well as obtaining specialist help, it is really important for families to find a local doctor they can rely on to help manage the individual’s overall health, whether this is the Community Paediatrician, Consultant Neurologist or GP. 

 

UK Rett syndrome clinics and doctors

Below you can find a list of doctors with an identified special interest and expertise in Rett syndrome. Each clinic is different, some only run on a handful of days a year seeing a small number of patients, whereas some have much more frequent clinics and a higher number of patients.

Only two UK Rett syndrome clinics see adults as well as children; these are the CIPP Rett Centre and Manchester Rare Conditions Centre. 

Referrals to these clinics will typically need to be made by a consultant, or community paediatrician. This excludes the CIPP Rett Centre which accepts direct referrals from families, patient organisations such as Reverse Rett or clinicians as appropriate. 

If you need further information about a referral to any of the clinics, please get in touch. 

At Reverse Rett, we are actively seeking clinicians with an interest in Rett Syndrome, those who are interested in developing Rett-specific provision and those who may be interested in delivering emerging Advanced Therapy Medicinal Products as and when they are shown to be safe and effective. Please contact [email protected] for further information 

 

  • Professor Paramala Santosh

    CIPP Rett Centre

    Professor Santosh – Consultant Child & Adolescent Psychiatrist, Centre for Interventional Paediatric Psychopharmacology & Rare Diseases (CIPPRD) Maudsley Hospital, London. 

    Children and adults

    The CIPP Rett Centre is focused on cohesive clinical management of the symptoms of Rett syndrome for patients of all ages with a particular emphasis on emotional, behavioural and autonomic dysfunction including breathing irregularities, anxiety, agitation, dystonia, sleep etc.  

    National remote monitoring is also available for all patients. Email here

  • Dr Dan Lumsden

    Evelina Rett Clinic 

    Dr Dan Lumsden Consultant in Paediatric Neurology and Complex Motor Disorders, Evelina Children’s Hospital, London. 

    Children only.

    The Evelina Rett clinic is a specialist outpatient clinic for children with Rett syndrome up to the age of 16 which accepts medical referrals from consultant or community paediatrician) of any patient with genetically confirmed Rett syndrome or clinical features suggestive of Rett syndrome up to the age of 16.  

    It runs on the second Monday of every month, 1.30-5pm. Three appointments are available in each clinic. Email here

  • Dr Jay Shetty

    Royal Hospital for Children, Edinburgh

    Dr Jay Shetty, Consultant Paediatric Neurologist

    Children only.

  • Professor Siddharth Banka

    Manchester Rare Conditions Centre 

    Professor Siddharth Banka, Consultant Clinical Geneticist 

    Children and adults 

    The clinic is multidisciplinary with support from a dietician, Ms Hazel Billson and a physiotherapist, Ms Karen Perry. 

    3-4 specialist half day clinics are held each year in Genetic Medicine St. Mary’s Hospital. Referrals should be made to Prof Siddharth Banka. 

    For further information about these clinics, please contact 0161 701 0980.

  • Adrian Kendrick

    Bristol Royal Infirmary

    Adrian KendrickConsultant Clinical Scientist at Bristol Royal Infirmary, specialist sleep assessments. 

    Children and adults. No specific clinic times/dates. 

     

  • Dr Katherine Martin

    Nottingham Children’s Hospital

    Dr Katherine Martin – Children’s & Adolescent Services, Nottingham Children’s Hospital. 

    Children only  

    www.nuh.nhs.uk/nottingham-childrens-hospital

     

  • Professor Sameer Zuberi

    Royal Hospital for Children, Glasgow

    Children only.

    Prof Sameer Zuberi, Consultant Paediatric Neurologist and Honorary Professor within the School of Medicine and School of Health & Wellbeing at the University of Glasgow leading the Paediatric Neurosciences Research Group.

Previous UK clinical trials for Rett syndrome have taken place at the following locations:

EDINBURGH: Royal Hospital for Sick Children in Edinburgh/NHS Lothian Paediatric Clinical Research Facility 

LIVERPOOL: Alder Hey Children’s Hospital/NIHR Alder Hey Clinical Research Facility 

LONDON: CIPP Rett Centre/NIHR King’s Clinical Research Facility 

LONDON: Evelina Children’s Hospital in London/Wolf Clinical Research Facility 

MANCHESTER: Manchester Royal Infirmary/NIHR Manchester Clinical Research Facility (adults) Manchester Clinical Research Facility at Manchester Children’s Hospital. 

NOTTINGHAM: Nottingham Children’s Hospital 

 

UK clinical trials

Reverse Rett has now supported the implementation of four UK clinical trials of potential drug treatments for Rett syndrome, by recruiting patients from the Rett Registry UK, conducting pre-screening, making referrals to trial sites and making travel and accommodation arrangements for families attending study visits.

All UK drug trials for Rett syndrome are now currently completed or terminated. In early 2024, the UK regulator, the MHRA has given two gene therapy companies, Neurogene and Taysha Gene Therapies, the green light to start UK clinical trials for their Rett syndrome products in children in the coming year.ind information about all current clinical trials for Rett Syndrome worldwide at the searchable website clinicaltrials.gov

For questions or introductions to the above clinical trial sites, please email: [email protected]

Interested in participating in clinical trials?

The best way to express your interest in UK clinical trials for Rett syndrome is to sign up for the Rett Registry UK. Signing up means we can contact you directly about upcoming trials and enables us to build a stronger case for improved clinical provision and access to emerging treatments in the UK and beyond.

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