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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 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 are currently supporting two UK clinical trials investigating potential treatments for the symptoms of Rett Syndrome.
Reverse Rett are supporting the studies 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.
These clinical trials are: Sarizotan (STARS) which is taking place at King’s College Hospital in London, under the leadership of Professor Paramala Santosh. The STARS study is sponsored by Newron Pharmaceuticals. Recruitment for this trial is now complete and results are due in October 2019.
GWP-42003-P (Cannabidiol) which is taking place at three trial sites; Alder Hey Hospital,Liverpool and two sites in London (tbc). This trial is sponsored by GW Pharmaceuticals. If you would like to express interest in your child participating in the GWP-42003-P trial please register them on the UK Rett Syndrome Patient Registry at Reverse Rett today and you will be contacted.

UK Rett 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

    Consultant Child & Adolescent Psychiatrist Centre for Interventional Paediatric Psychopharmacology & Rare Diseases (CIPPRD) Maudsley Hospital, London Children and adults

  • Professor Sameer Zuberi

    Consultant Paediatric Neurologist Royal Hospital for Children, Glasgow

  • Dr Ram Kumar

    Consultant Paediatric Neurologist Alder Hey Children’s Hospital

  • Dr Daniel E Lumsden

    Consultant in Paediatric Neurology and Complex Motor Disorders, Evelina Children’s Hospital, London Children up to 16

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

If you are interested in participating in UK clinical trials, please add the person you care for to the UK Rett Syndrome Patient Registry at Reverse Rett. 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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