CPMRS interventions are based on a holistic multi-modal approach. Recommendations regarding intervention are made and pharmacological treatment is initiated as part of Shared Care Protocol with local services. The individual is reviewed by telephone during the initial titration phase and during any medication changes. Once medication is stabilised, they are reviewed within the follow up clinic and co-worked with local services, with a view to maintaining stabilisation. In addition, consultation and supervision is offered to local services to help them to modify interventions to take into account the individual’s complex neuropsychiatric and neurodevelopmental difficulties. Patient data will be used for research to improve clinical care.
The Centre accepts referrals from a variety of sources. These include Consultants from various specialities (including paediatricians and neurologists), GPs, patient organisations and self-referrals.
As part of the referral process, parents/carers will be asked to complete a battery of online questionnaires which will inform the acceptance and prioritisation of the referral. Local services are expected to be either involved or be willing to work within a Shared Care Protocol in order to optimise outcomes quickly.
To refer a patient to the CPMRS, email: firstname.lastname@example.org
The TRIAL Database is a registry through which the CPMRS team are able to monitor the well-being of individuals with Rett Syndrome nationally, regardless of their CPMRS patient status. This also enables the CPMRS team to use anonymised patient data for research to improve clinical care.
To register a person with Rett Syndrome on the TRIAL Database, email: email@example.com
Whilst the Centre for Personalised Medicine in Rett Syndrome (CPMRS) is funded by Reverse Rett, Reverse Rett and Rett U.K. are working collaboratively to refer patients, support participation in clinical research and communicate wider learnings from the Centre. If you need help with any aspect of referral please email firstname.lastname@example.org or email@example.com