Reverse Rett have been seed funding Dr Santosh and his team at King's College London and the Centre for Interventional Paediatric Pharmacology and Rare Diseases (CIPPRD) since 2014 for their work on the TRIAL Project. Through this project, the team are working to develop new and improved outcome measures for patients with Rett Syndrome.
By using a combination approach including an online reporting tool, specifically designed for the parents/caregivers and clinicians of patients with Rett Syndrome and wearable technology, like a watch, which will gather physiological information from the patients themselves, the doctors and researchers will be able to accurately measure improvements or changes, when they are trying new and existing medications and treatments in people with the condition.
This tool will also enable clinicians to more accurately assess whether subtle adjustments in dosage can make a significant impact as well as providing better understanding of the impact 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.
The protocol for the TRIAL Project was recently published in the British Medical Journal, Open Edition. You can read more about this work and access the full article here.
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, including Rett Syndrome, 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 email@example.com