Congratulations to Dr Santosh and colleagues at the Department of Child and Adolescent Psychiatry, King’s College London and the Centre for Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD), Maudsley Hospital who have recently had the protocol for their Rett project published in the British Medical Journal Open Edition.
Through this project the team have been working to develop a reliable tool which will allow doctors to track all symptoms and the relationships between them in patients with Rett Syndrome. The tool also allows tracking of symptom change as and when existing or emerging treatments are given.
Information will be gathered through an online questionnaire called the ‘Rett Evaluation of Symptoms and Treatments’ Questionnaire (REST) as well as via wearable technology, worn by the patients with Rett.
This combined data is gathered onto a web-based platform called ‘HealthTracker.’ The data will not only empower clinicians to distinguish between different symptoms of Rett and allow streamlining of care pathways for individuals but it will also collect useful information across the lifespan.
This sort of monitoring could be potentially life-saving for individual patients with Rett as well as enabling better medical management of the condition. It will also enable researchers to look at patterns in physiology and in the patient reported data from the REST questionnaire, in many patients over a longer period of time.
Reverse Rett has been seed-funding this work since 2014 and will continue to support the project as it is rolled out for validation.
Next steps are to invite UK families of patients with Rett Syndrome to assist with the validation of the TRIAL Project.
If you would like to express interest in participating in this study, please email firstname.lastname@example.org in the first instance or add your child or adult with Rett Syndrome to the Reverse Rett Patient Registry here.
As and when we are seeking to recruit volunteers to help with this and other research projects, we will write to the families of registered patients first.
The full BMJ article, entitled, 'Development of the Tailored Rett Intervention and Assessment Longitudinal (TRIAL) database and the Rett Evaluation of Symptoms and Treatments (REST) Questionnaire' can be read here.