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Clinical care information

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

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 at the searchable clinicaltrials.gov website.

UK Clinical Trials

Reverse Rett are currently supporting the first UK clinical trial for a potential treatment for Rett Syndrome, the Sarizotan Clinical Trial (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. Reverse Rett are supporting the study by: – Funding a Full-Time Clinical Trials Coordinator based at the Trial site – Recruiting patients from the UK Rett Syndrome Patient Registry – Conducting pre-screening and making referrals to the trial site – Making travel/accommodation arrangements for families on study visits The STARS study is a multi-centre, international clinical trial. If you have a child with Rett who has breathing irregularities in this age group and you have not yet registered them on the UK Rett Syndrome Patient Registry at Reverse Rett, please register today.

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. At Reverse Rett, 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@www.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

  • Dr Catherine Breen

    Consultant Clinical Geneticist, Manchester Centre for Genomic Medicine, Adults only

  • 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 feel helpless, or powerless or hopeless in the face of a Rett diagnosis, please add the person you care for to our UK Rett Syndrome Patient Registry. Signing up means we can contact you directly about clinical trials, the latest research 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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