Information about current UK clinical trials can be found below. We look forward to clinical trials to come, which will include trials of gene therapies that we hope will treat the underlying cause of Rett Syndrome. You can find information about all current clinical trials for Rett Syndrome worldwide at the searchable website clinicaltrials.gov website.
Reverse Rett is currently supporting the Anavex 2-73 clinical trial by recruiting patients from the UK Rett Syndrome Patient Registry, conducting pre-screening, and making referrals to trial sites, making travel/accommodation arrangements for families attending study visits.
The Anavex trial is currently only open in the UK to patients between the ages of 5 and 17 at trial sites at CIPP Rett Centre, King’s College Hospital, and Evelina Children’s Hospital in London, Manchester Royal Infirmary/Manchester Clinical Research Facility, Nottingham University Hospital, and the Royal Hospital for Sick Children in Edinburgh.
For more information about this clinical trial, please contact andy@reverserett.org.uk.
Below is a list of UK clinicians with special interest and or expertise in Rett Syndrome. Referrals to the specialists listed below will need to be made by your son or daughter’s GP, consultant, or paediatrician. In collaboration with the UK Rett Disorders Alliance, we are actively seeking clinicians with an interest in Rett Syndrome and/or those who are interested in developing Rett-specific provision. Please contact rachael@reverserett.org.uk for further information or to have your name and information listed on this page.
CIPP Rett Centre. Consultant Child & Adolescent Psychiatrist Centre for Interventional Paediatric Psychopharmacology & Rare Diseases (CIPPRD) Maudsley Hospital, London.
This Centre runs year round and provides assessment and management of patients of all ages remotely and in person where appropriate.
Consultant Paediatric Neurologist Royal Hospital for Children, Glasgow. Children only.
Consultant Paediatric Neurologist Alder Hey Children’s Hospital. Children only.
Consultant in Paediatric Neurology and Complex Motor Disorders, Evelina Children’s Hospital, London. Children up to 16. Georgina Feint – clinical specialist speech and language therapist
This clinic is held every two months for patients up to the age of 19.
Consultant Paediatric Neurologist Edinburgh University.
Children only.
Consultant Clinical Geneticist
Dr Banka is a Consultant Clinical Geneticist and holds adult Rett clinics twice a year at St Mary’s Hospital, Manchester.
Consultant Clinical Scientist at Bristol Royal Infirmary, specialist sleep assessments.
Children and adults. No specific clinic times/dates.
Paediatric Neurologist at the Royal Hospital for Children, Glasgow and Honorary Senior Clinical Lecturer at the University of Glasgow.
Children only.
Children’s & Adolescent Services, Nottingham Children’s Hospital.
If you are interested in participating in UK clinical trials, please add the person you care for to the Rett Registry UK. Signing up means we can contact you directly about clinical trials and enables us to make a better case for improved clinical provision and better treatments to become available in the UK.
