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Clinical care information

This is an exciting time in Rett Syndrome clinical research. UK clinical trials are underway to treat key symptoms of Rett Syndrome and improve quality of life.

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.

UK Clinical Trials

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 over the age of 18 at trial sites at CIPP Rett Centre, King’s College Hospital in London and Manchester Royal Infirmary/Manchester Clinical Research Facility. For more information about this clinical trial, please contact andy@reverserett.org.uk

UK Rett Syndrome Clinicians

Listed below are 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.

  • Professor Paramala Santosh

    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.

  • Professor Sameer Zuberi

    Consultant Paediatric Neurologist Royal Hospital for Children, Glasgow. Children only.

  • Dr Ram Kumar

    Consultant Paediatric Neurologist Alder Hey Children’s Hospital. Children only.

  • Dr Dan Lumsden

    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.

  • Dr Jay Shetty

    Consultant Paediatric Neurologist Edinburgh University.

    Children only.

  • Dr Siddharth Banka

    Consultant Clinical Geneticist

    Dr Banka is a Consultant Clinical Geneticist and holds adult Rett clinics twice a year at St Mary’s Hospital, Manchester.

     

  • Adrian Kendrick

    Consultant Clinical Scientist at Bristol Royal Infirmary, specialist sleep assessments.

    Children and adults. No specific clinic times/dates.

  • Dr Andreas Brunklaus

    Paediatric Neurologist at the Royal Hospital for Children, Glasgow and Honorary Senior Clinical Lecturer at the University of Glasgow.

    Children only.

  • Dr Katherine Martin

    Children’s & Adolescent Services, Nottingham Children’s Hospital.

Take the fight directly to Rett Syndrome and sign up to the Rett Registry UK.

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.

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