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UK Clinical research

Reverse Rett are currently funding Dr Santosh at the Centre for Interventional Paediatric Pharmacology and Rare Diseases (CIPPRD)  and King's College London research team to develop new and improved outcome measures for patients with Rett Syndrome.

This will allow doctors and researchers to accurately measure improvements or changes, when they are trying new and existing medications and treatments in people with the condition. This information will be combined with physical information gathered through the use of wearable technology like a bracelet watch. It is envisaged that the combined approach to developing new outcome measures will enable clinicians to check, not only if a particular medication is working, but whether subtle adjustments in dosage can make a significant impact. It will also allow clinicians and researchers to have a better understanding of the impact the treatment may have on symptoms which are typically more difficult for observers to assess. This is particularly vital in this population where patients find it more difficult or indeed cannot communicate problems with concerning symptoms.

Clinical Provision

Aside from his clinical research work on outcome measures for patients with Rett Syndrome, Dr Santosh runs a national specialist clinic, the Centre for Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD). The focus of this clinic is on managing the secondary symptoms of a variety of conditions, with the use of medications or other approaches as appropriate. Dr Santosh is currently utilising the new technology supported by Reverse Rett, within the CIPPRD provision.

Preliminary data analyses are showing very interesting early findings of fluctuations in symptoms and/or changes in symptoms which are associated with the use of medications which until now have typically been undetectable to parents and caregivers.

For more information about how referrals to the CIPPRD clinic, please email rachael@reverserett.org.uk